If you can't say anything nice ...
Comments
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Sorry, Kicks, I'm not following your logic here -- "Bottom line - those who say 'be nice or say nothing' are saying there is no room for other's thoughts/experiences because they know all."
Treating others with dignity and respect (kindness) is not about denying others' thoughts/experiences. It's about how we convey our thoughts/experiences, not the message itself.
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When this topic started it started for one reason and one reason only. Now everything in world has been dragged into it.This isn't about knowledge it isn't about expertise. Some have taken this to a different level.
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There's an inherent problem with posting via the written word vs the spoken word. Depending on what mood/mindset the reader is in they can/will project their mood/mindset to the post.
Recent example unrelated to BC or this forum:
I disagreed with some numbers presented by a person above me in an organization after he had publicly shared them with stakeholders who would determine the fate of the organization.I reran those numbers (they were grossly incorrect) and sent them to him but he ignored them. I consulted with an outside source who told me it was my fiduciary duty to share the correct numbers with the group or I could potentially be held liable and/or the whole group could be held liable ( and I so don't need to be sued when I'm dealing with all this.) So I simply forwarded the email I had sent him to the entire group with the intro that I wanted to keep everyone in the loop on what I had sent him. his response to everyone on the message was a one line - 'thank you for sending this to everyone' So how to take that? I figured he'd be upset, so combined with that and that there was no punctuation and he didn't bother to elaborate I took it as a very sarcastic upset thank you. But if you take the words on their face don't put any tone in them it could be an appreciative thank you. He stepped down right after so I can only assume it was a sarcastic upset thank you.
The only solution I can see to clarify would be to switch to voice recordings instead of text, require everyone to start each paragraph with a mood/tone designation (i.e. 'Happy' 'angry', 'frustrated', etc), or everyone on the board give posters the benefit of the doubt that they are being kind and helpful in their responses - maybe we could include that last one in the guidelines/instructions on how to use the forums that no one reads (just joking!)
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NotVeryBrave, as the person who started the "firestorm", let me say for the record that I had no problem with your first post nor the fact that you started this thread. As I wrote in my very first line of my first post here, "I agree with most of what you said. Everyone should always aim to be polite and respectful when they respond to posts."
What led me to reply in this thread was not your initial post, but the reactions you received, which took your reasonable reminder and turned it into a insult-fest against frequent posters.
I wrote my first post with the intent of getting people to step back a bit and think about what they were saying. Yes, there are occasional posts that come across too harshly, and as you said, these seem to sometimes come from the "same frequent posters" who "can be so positive and understanding". Okay then, why does this happen? I tried to answer that.
It's clear from the responses to my post that there are some who think I took the thread off-track and made a much bigger issue out of something that's simple. In fact I was directly addressing the issues raised in the opening post. While the symptom might appear simple (posts that come across as being "not nice") and while there might appear to be a simple solution ("just be nice" or don't post), the real issues behind the problem are long-standing and anything but simple.
If nothing else, what this thread has weeded out is that we all have to be careful in what we say/write. Some of the rudest posts I've read in a long time come from those complaining about the "not nice" posts from the frequent posters. But I suppose "those members will never get that it's them that we are talking about".
As for all the discussion that this thread has generated, if you raise a problem, you have to be prepared for where ever that discussion might go. Inevitably not everyone will see the problem the same way that you do, and there might be much more to it than what you see. Considering all the twists and turns of where this discussion has gone, it would be nice if it would lead to changes to the rules and structure of the board that make it easier for the frequent posters to offer sound, reliable, accurate and kind advice to newbies, but unfortunately I don't see any changes coming from this at all.
(Edited for spelling corrections only)
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Bessie - NotVeryBrave didn't start this I did she later started the topic. It's gone off topic from what I believe she intended. This is a great place I think we can all agree to that.
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Beesie, I agree with every word in your post, well said.
Susug, please note her name is BEESIE, not Bessie. It is about knowledge and experience btw. Virtual hugs and kisses may be "nice" but do not give people the correct information they need to keep things in perspective and make rational decisions.
Minus, I think it is deplorable that you and the other ladies who have for years given your time to consistently give knowledgeable, rational and kind advice have been treated with such disrespect and disdain by some posters on this thread. It is easy to tell people to step back and others will step in and help, but you ladies are the among the few who even bother to reply to the "Not dxd but worried" brigade as it is. There is a big difference between telling everyone to demand an MRI or biopsy and taking them through the diagnostic steps in a logical manner.
I've never claimed to be nice
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Freda- this post was never about knowledge drama it up all you want I'm done with BCO.
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Sites which work on usernames and avatars have a tougher edge to them than sites where people post under their own names. The latter generally have "nicer" discussions. Anonymity is not necessarily a bad thing, and a laissez faire approach often results in a dynamic and interesting interchange of viewpoints and information, as in this topic. But, as with laissez faire economics, which are free from regulations, the strong prosper and weak fall by the wayside.
This may be all well and good, except that when it comes to medical matters, each and everyone coming to BCO for the first time deserves special and considerate attention that fulfils their needs. Surely, whoever is prepared to do this is the right person to post responses to these people.
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Susug, you and I must be reading different threads.
In your past couple of posts, you've said "This isn't about knowledge it isn't about expertise" and "this post was never about knowledge".
However in NotVeryBrave's opening post, she said, "I've noted tons of educated individuals helping tons of people who are BC ignorant" and she mentioned that it's the "same frequent posters" that she's raising concerns about. Her comment was that "I would suggest that if you can't answer someone's question in a helpful way then don't."
So it seems pretty clear to me that this thread was raising a concern related to posters who provide knowledge and expertise, and answer questions asked. This is why the issue is about a lot more than just being nice and offering comforting words. It's seems that you and I disagree on that, and that's perfectly fine. However as I said earlier, "if you raise a problem, you have to be prepared for where ever that discussion might go."
Freya, thank you!
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my gosh, I wholeheartedly agree, NotVeryBrave. I've also written a few posts on here only to delete them before posting, simply bc I was afraid that I would get knocked down. I've seen it while anonymously scrolling. Sometimes it takes my breath away. And sometimes it's downright comical that an individual would post something so derogatory.
When you're first diagnosed, it's very easy to think irrationally. We're all terrified. BUT, not one question is ignorant. I can guarantee that everyone of us have had questions that we were too afraid to ask. I'm very thankful for each question, each statement, each scenerio, each bit of advice.It broadens our knowledge.
What gets me the most, is those that think they are right about everything. I am extremely grateful for their advice, but No two cancers are the same. No two treatments are the same, and We all know this. Yes, the cancer diagnosis can be similar, but they're not the same. I've taken some advice, but I listen to my doctors first and foremost. I've brought to their attention many discussions presented on this forum. Sometimes they agree, sometime not. and yes, I've gotten second AND third opionions from different doctors, just to be sure. It's a catch 22. Damn if you do, damn if you don't.
Everyone means well. Maybe they are just having a bad day. Hell, I sure have had many bad days. We're all in this shithole together. We have to band together to fight this beast. And we will.
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My Grandmother came to this site when she was first diagnosed and it helped her so much. So when I started having these issues she told me about it. I just thought maybe someone could give me some insight on my situation and help ease my mind. Not so much. I have seen a lot of negative comments for people like me with concerns.
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Well said Beesie and Freya!
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Bessie - a few days ago I was reading some post from newly diagnosed several of them and I felt sad because I thought some of the comment were a little hash. I called someone out on it ( which in hindsight was wrong of me to do that ) my comment which I think is where this all started was just about compassion only. I never said anything about anyone posting about treatment ect. I have to say this community helped me through some scary times. I truly have felt like I have made friends here. Today at my once a month Birthday lunch I met a girl that is going through radiation now. I told her about this forum. I never mentioned this topic. I told her she would love it here. I wish the best for everyone here. Sus
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As a newbie, I have to say that I totally agree with Rrobin and SSmith. I also want to thank NotSoBrave for being brave enough to acknowledge it. I'd also like to throw in there that some of us are menopausal women, and some of us are actually acting like menopausal women (me included). We're all emotional is some way or another. My feelings were a little hurt when my posts were ignored (I felt worthless). I'm getting over it because it's not worth the worry.
I have to be honest. I've posted about 20 messages in the last week. I even announced that I was new to the community, even though I had been reading everything on BCO since the day I was diagnosed and felt like a part of the family. It was when I started posting that I didn't feel the love back. You know why? Because no one has even welcomed me to BCO. I've had many snippy comments (some were constructive criticism). I don't have a problem with that. I have a thick skin. But seriously, why can't people be nice enough to welcome a new person first before making those comments? Is that being too nice?
I understand that people are having to deal with newly diagnosed and frightened people who need comfort. As someone who is new and not newly diagnosed, I've thought about backing away from posting and just going back to lurking. Why? Because I've been through the worst part of my treatment. I'm happy with what my MO's treatment plan. I've always researched things on my own. I do that stuff for a living (fixing bugs in programming). There's a wealth of knowledge out there, you just have to look for it. I thought I could share some of the things that I found, and find people who were having the same SE issues (just to share). I wanted to offer insight as well, but everything that I've done seems to be wrong.
We all have different types of BC or different hormone receptor percentages. I get that. Not everyone has the answers, but again... Why wouldn't you want to at least welcome a new member? I really think it would be helpful.
The bottom line (for my situation only) is that some people are welcomed with open arms. Others, not so much.
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TampaBayBucsGirl, Welcome to the community! I'm sorry that you haven't been welcomed previously.
Here's what I think happened. From my quick review, it appears that almost all of your posts have been placed in the middle of threads where a discussion has already been going on - in some cases, these are 100+ or 600+ page threads with active discussions. Your posts simply got caught up in the normal etiquette (or lack of etiquette) that exists with these types of threads. Your posts weren't acknowledged as being posts from a newbie but were treated like everyone else's posts - which are sometimes commented on and sometimes passed over. It happens - when I was posting regularly, I sometimes would think that my posts were invisible, because I might post 10 times in 10 different threads, and not receive a single acknowledgement while the discussion went on all around my posts. And many times I would think that my posts were the kiss of death, because I would post something in an active thread, and then the thread with die, with no response to what I'd said. That's just the nature of this discussion board, where there are so many people, so many topics, and so many existing relationships and on-going discussions (often between a particular small group of people even though other people may be posting too). Most threads only go on for 5 or 10 posts, and then stop with no further discussion. If you join a new thread, it's possible that the discussion might happen to stop right after your post - it's nothing personal, it's just what happens to most threads. And with those long on-going active threads, any individual post can easily get lost in the fray. It can also be hard to break into these types of on-going discussions when you join mid-way through. Over the years I've attempted that a few times (joining a discussion on page XYZ of the thread) and usually have given up because it's so hard to break into the core group that are talking among themselves. Just like in real life, if you join a big group of women who all know each other and are already huddled together chatting away, you might have trouble breaking through. It's no different here but since we are not physically visible, it's easier for any one individual to get lost in the crowd.
In scanning through the replies you got (granted, there were very few), I didn't see any "Welcomes!" but I also didn't see anything even remotely offensive - you were simply treated like all the other established members posting in these areas of the board.
If you had posted in the "Just Diagnosed" forum, or if you had started a new thread in that forum or even one of the treatment forums and identified yourself as a new member, I'm sure you would have been welcomed - I certainly hope you would have been. I wasn't sure how I felt about pupmom's suggestion for a New Member's Forum, but your post supports the case for such a forum - perhaps a forum where all new members with a breast cancer diagnosis (who are in a very different situation from 'not diagnosed' newbies) post first, to be welcomed and acclimatized to the board. Within that forum, people could help newbies understand what information they should provide on their profile to ensure that they get the most relevant responses, and based on their diagnoses and concerns and interests, the newbies could be be directed on to other forums and threads that are appropriate.
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Hi Beesie,
Thank you!
I have to admit that everything you said all seems very logical. I did take a few comments as being snippy. Maybe I misread them. There were other replies that were very nice. I just think it would soften the blow a little if a simple little welcome came before a counter reply. I guess I'm just speaking for newbies who post midstream. I do see a lot of friendships are formed in the forums where people are going through chemotherapy together. I guess it's better to start off in one topic like that, or in the "Just Diagnosed" forum.
Thanks for understanding my concerns!
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Hi TampaBayBucsGirl!
Welcome! I believe you've posted in the TriplePositiveThread, which is pretty active. People come and go on that thread, but there are some of us regulars who check in often.
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Mods do try to post a welcome to new members, though I know many people (including me) don't get one.
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So, maybe one important issue is what do newbies want more, information or hugs. Probably depends on the individual, but I know my goal was to learn everything I could as soon as possible about my diagnosis and prognosis. At first, and probably still lol, I made many stupid mistakes interpreting all the data, and was grateful to those who straightened me out. I needed to know! Emotional support was nice and gratefully appreciated, but knowledge was my real goal. Of course, hopefully, both can be present, but I never really worried if every informative post wasn't totally warm and fuzzy. That's just me!
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I many times post....I'm very sorry you are going through this. There are so many educated smart women who will be along to help find answers to your questions......because I am in awe of the women on these boards.
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Well, thank you all!
Okay, so I guess I did overanalyze a few things. It could also be the Tamoxifen. 
I really have found a lot of great information from BCO (since being diagnosed). You all have provided great tips. Yes, I do agree that some are looking for information and others are looking for support. I'd like a little of both. I've found that here. Just not so much in the beginning. I get it now. I also see that it will be a continuous learning process even well after the treatment is over.
Elaine - Yes, I did post to the Triple Positive thread. It's definitely a very active thread. I think it's as Beesie said though. I posted in the middle of a discussion, and that is long gone already.
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I doubt anyone here means to be mean. I'm not a terribly warm and fuzzy person. Doesn't mean I don't care or don't want to help. That's the problem with text. Those of us who aren't much into the warm and fuzzies are probably seen as not nice esp if we are trying to correct something that is incorrect. Those of us who stick around after we are "done" do so to try and help. As in life people are different. And it shouldn't be forgotten too that some of us "done" are dealing with horrid se's, financial stresses, etc that comes with this. To say if you can't say something nice don't say anything at all leaves out a ton of possibly great advice/info. I too came to this board looking for help/advice/info/prognosis stuff. The welcomes and hugs were nice but I think most people are looking for info over hugs. Those who can do both, great. Please stay around and be the greeter to the forum. As for the mods welcoming everyone I can't remember if I was or not. No matter to me. I'm on many different forums and no one welcomes anyone. We just jump right in.
If you want to read someone who is cold, go to the social security disability forum and read Different Perspectives posts. Wow. Even me who doesn't care was offended a time or two with his straight shooting response that makes you feel outright stupid. But he's very knowledgable as he's worked in that field for a long time and has a ton of great advice and insight. People just have to learn he means no harm but that's the way he is. If he didn't care why would he post valuable info on that board? He's certainly not bored.
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I think we can all agree that being diagnosed with BC is a very stressful and terrifying time. Women/men come here looking for information, compassion and sometimes reassurances. I understand why this thread was started. I don't think anyone should be scolded when they post here. It would be great if everyone added their diagnosis/treatment and didn't post the same question in multiple threads but we have to remember that this IS a very stressful and terrifying time. Goodness, I can't imagine what I would have done if I received some of the rude responses others have received. Thankfully I found the triple positive thread. The women there were knowledgeable and compassionate at the same time.
Sometimes it's hard to interpret the tone of a response. Two people can interpret a post in a different way. At the end of the day I believe we should all stop and re-read our responses before we post. Is this post going to be helpful or hurtful? Are we responding because we want to help or we're just irritated with the way/how many times they've posted.
This site was a huge help to me when I was first diagnosed. I'm not sure how different my life would have been in the beginning if I didn't have this lifeline. I'd like to see others feel comfortable here too.
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How about some facts to this situation. Susug says she started it all by calling someone out (copied and pasted below). I do not see anything insensitive or rude in either response by MinusTwo, just practical common sense advice. I have actually never seen a post by MinusTwo that was anything but helpful and kind. Susug, you criticise someone who does respond and help, but admit yourself, in the last line of this post that you follow and read posts but don't respond. If you don't like the way something is being done, then do better yourself. To complain and do nothing, is just whining.
Susug wrote:
some of the comment were a little hash. I called someone out on it
One thread:
MinusTwo wrote:
it would be helpful if you continued posting & asking your questions on your previous thread & stick to one. That way we can all see the back story and review the answers posted to date with out having to jump back & forth or research your previous questions.
Susug wrote:
Minis Two you need to stop telling the new people that are posting in different topics to stick to one. I'm sorry but it's sound insensitive and rude.
Another thread:
MinusTwo wrote:
we all want so support you, but it would make more sense to post this on your previous thread where everyone can see the back story.
Susug wrote:
I personally think you should post in any forum you want. I read a lot of post so I knew who you were I have been following you since your first post. I think many of us read many many without responding.
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Walking into a well established community and telling the members how they should act never ends well.
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I sent MinusTwo a private post and apologized for how I handled that. It was insensitive I should never have posted that publicly
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This site's introduction for those just diagnosed, and lots of tips on how to use the site is here:
https://community.breastcancer.org/forum/131/topic...
If this was compulsory reading for those coming to the site, it would be a good thing. Perhaps not being able to sign up until acknowledgement of reading the page.
Since pupmom's suggestion of a forum for newbies seems popular here, those in favour might like to suggest it to the Mods:
To send a Private Message to the Mods: community.breastcancer.org/mem...
Normally they'd come in on a discussion like this, but they're obviously letting the discussion run its course. Arguably not a bad thing. -
Alas, we decided to post something, as the conversation has waned.
Thanks all for your thoughtful comments. BCO is an inclusive community and everyone deserves a welcoming reception, free of critique and personal frustration. No one is obligated to welcome new members or even to share advice, but it's always nice to do so if you feel inclined to support others.
If a post feels inappropriate, in violation of the rules or if a thread is getting out of hand, please alert the Moderators with a private message. In your request, include a link to the post/thread for us to review.
Finally, we know there is work to be done on our site. As a non-profit organization, we have been raising money toward redesigning BCO and are getting closer to implementing a whole host of new features to improve your experience. Please be patient and know that all of your suggestions are being considers on our wish list for the new site.
In the meanwhile, we're taking any opportunity we can to make improvements with the resources we have available now. There are many great suggestions in this thread that we can begin to implement.
Thanks so much,
The Mods
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Mods,
I'm sure we understand this: "No one is obligated to welcome new members or even to share advice, but it's always nice to do so if you feel inclined to support others."But, do you have a policy of responding to questions from new members that remain unanswered?
And re: "implementing a whole host of new features to improve your experience."
Can you please tell us what these new features will be?
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What some of you newer members don't realize, is that other members communicate frequently with each other through messages. We deal with chronic problems, and are diplomatic. That is an example of "behind the scenes" work that not everyone is privy to. I can come across a bit harsh with some worried persons, but I also communicate alot through messages. If I don't like the tone of a particular thread, I will just send my opinion and support privately.
Also, I don't think that some of the "issues" of members mentioned here, are appropriate. If you take issue with someone, send them a message. The old saying goes, "don't air out your dirty laundry in public." I have come to appreciate the frequent posters, even though I don't agree with everything that they say.
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