Information vs. reassurance
Comments
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I love the graphic. Very interesting way of looking at what the person is actually seeking.
I hate the suggestion that we need to be tone policed because someone might interpret our words in the wrong way. This a peer to peer support board & the responses will vary because we all bring our own skills and experiences to a conversation. I don't think it's anyone's place to tell us to remove ourselves from the role of helpers. It's a community. Every member gets to participate how they wish, to the extent they're able, within the board rules. We bring unique voices and approaches and that is enriching.
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I’ll use this as guidance as do find it difficult to recognize what posters are after sometimes. I’m an info seeker and find simply telling people what they want to hear disingenuous and perhaps dangerous. That said, I’ve been told my bluntness doesn’t always go over to well, despite my good intentions. Interesting topic though, I usually consider if I have anything relevant to add, not so much if a poster is looking for reassurance.
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Illimae: I am going to respond one more time only here because I have so much respect for you and your contributions. Reassurance does not need to be disingenuous. You provide reassurance all the time. I follow you because I have a best friend with similar dx and I offer her info that I acquire on BCO. It’s why I returned. I now have three close friends with dx from stage II thro IV. They don’t like chat groups. I don’t think I do either. I get hurt here for myself and others repetitively. When we reassure others due to our experiences, that can be seen as disingenuous. Because our experiences have little to do with theirs. But we do it because we want to offer hope. Being blunt with heart is you. But it’s the heart that comes across. I have never been disingenuous with anyone I have helped or avoided honest feedback. But I have been reassuring. And I am determined to reach out and help others regardless of how they are perceived by others. Thanks Illimae for helping my family in ways you could not possibly know.
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I had inflammatory breast cancer. I found it myself, very early, because a friend had died of IBC a few years prior and I was familiar with the signs. I slogged through years of chemo, surgeries, radiation, reconstruction...well, you know. I'm grateful to be alive and NED.
BCO walked with me through all of this, and I'm immensely grateful. I learned enormous amounts about breast cancer, shared my journey with women (and men) traveling through the same fandango, enhanced my awareness, discovered new questions to ask my oncologist. I made friends. I cried when I lost sisters I only knew through their screen names. Apple. Amarantha. Pure. I wept when they died.
Over the years, I've encountered lots of people who are seeking information, and lots who are seeking reassurance. And lots who seem to be convinced they have cancer and no one can persuade them otherwise.
Sometimes people have an innocent rash, bug bite, irritation from clothing, or other non-sinister marks on their breast. Sometimes they Google their signs and "inflammatory breast cancer" pops up. And some of these folks turn to us, hysterical with anxiety and convinced, no matter what their doctor(s) tell them, no matter what their imaging reveals, no matter how minor or intermittent or long-lasting their signs/symptoms, that they indeed have IBC. They will not believe they are not dying. "The doctors have just missed it," they seem to think. "If I keep advocating for myself, keep pushing for another scan, another test, another opinion, they'll find it. I will be justified. My life will be saved."
And I ask myself, what should my response be to these individuals? Is it to repeatedly reassure? Back away? Tell them to get a grip and take an ativan? The truth is that the vast majority will not be diagnosed with IBC. But what about the one who has very early signs of cancer and is reaching out for help amidst all the noise of the thousands of heat rashes, bug bites, bra rubs, bruises from minor trauma, eczema?
For this reason I try very hard to express compassion and refrain from posting when I know my eyes are rolling.
Great thread, AliceBastable. Thanks.
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"And I ask myself, what should my response be to these individuals? Is it to repeatedly reassure? Back away? Tell them to get a grip and take an ativan? The truth is that the vast majority will not be diagnosed with IBC. But what about the one who has very early signs of cancer and is reaching out for help amidst all the noise of the thousands of heat rashes, bug bites, bra rubs, bruises from minor trauma, eczema?"
I think compassion burnout is real, especially when there are people who drain every last ounce out of those who try to help them. And it is unfair to the one who does have cancer, out of the many who don't, because they can get lost in that noise. And sometimes what some members erroneously see as lack of compassion is just somebody trying to get a new poster to stop screaming long enough to separate their legitimate worry from the rest of the racket so we CAN try to help.
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This board is the first time I have ever participated in any sort of chat/social media thing. Being relatively new here and jumping in straight at stage iv, I found great information about treatments, terms, learned questions to ask, and was pleasantly surprised with the welcoming notes from everyone. That said, I have found some the anxious posters disconcerting. I love the clear "teacherly" responses explaining where/how to post appropriately. When you are new it is hard to figure out what to ask let alone where, so those direct simple responses are helpful.
There are a couple who clearly need professional help, I hope they are getting it. From painful personal experience, (myself and 2 of my children have had dangerous experiences with this) it is not good to become emotionally invested with those if they are not already close to you.
BC is terrifying. I know there is help out there with social workers through for those who seek it and qualify through Cancercare.org, redroom.org, and cancer centers. They may also be able to steer people toward/help navigate psychiatric care if needed.
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One thing that I might try in the future, if I choose to engage at all with newcomers who seem very anxious, is to ask "are you looking for information or are you looking for reassurance?" This is similar to the question for someone complaining about something, of "would you like any advice or do you just want me to listen?" Obviously, people don't always know what they want, so the answer they give isn't necessarily going to change things. But it might help steer the discussion in a more productive way.
(And being the generally logical person I am, I can imagine the next steps in the decision tree, too... )
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Great Graphic. It is hard to know in a forum like this the undiagnosed seeking emotional help or actual information. As -2 mentions the ones starting multiple topics are usually more panicked and reassurance seekers rather than information seekers. Some come with misinformation, and when challenged with the correct information are too far gone and convinced their misinformation is right. Sometimes there is no coming back. I just try to be as compassionate and empathic as I can when I do reply to newbs. I joined after my surgery and started in my months radiation thread. Very helpful and was glad I read more than I posted at first.
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TB90, thank you, so many (past and present) have been helpful to me over the years and I am happy and grateful for the opportunity to return the favor.
You make a good point about reassurance and I wasn’t thinking in broad terms. My response was with the “I wouldn’t worry about that”, “you’ll be fine” comments in mind. Posts where a person is clearly in denial but has serious issues are particularly challenging. Ultimately, it comes down to is my comment going to help or hurt and are they even listening/reading or looking for validation only.
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I try to be kind to new posters; I remember my own terror and anxiety when I was newly diagnosed. I'm no cancer expert beyond my own experience, but it costs nothing to be kind to someone who is struggling. The world is a hateful enough place without me adding to that noise.
I will add that I read a lot of posts before joining in, and nearly left here because of some of the responses I read. My anxiety was very high and I didn't "need" to be lectured by frustrated moderator wannabees. JMO, of course.
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Interesting thread and discussion.
I recognize some of you here, because I read your comments and explanations all the time. Moth, Beesie, Illimae, MountainMia...sorry I dont know all of you. But I think I can recognize the type of posts you are describing, clarifying common misunderstandings and misperceptions. I am thankful for them. I dont think there is any need to tone police. I dont think there is a lack of compassion and respect in the forum. Even if sometimes the poster seems not to listen, not to accept or benefit from the advice or information offered, the person can come around later, and also please keep in mind that there are always other readers who will benefit
I have been panicked and asking for info and hoping for reassurance many times. In my experience, it is the truth and understanding (or whatever is closer to the truth given the uncertainty of this disease) that brings peace. So thanks to all of you who keep showing up to compassionately inform and explain. Please keep at it.
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Thank you so much for starting this topic, Alice. I think you hit the nail on the head when you described the noise created by some reassurance seekers as obfuscating the issue at hand, or drowning out the voices of other new people seeking help. A specific example in recent weeks comes to mind: a young man posted in the "Not Diagnosed But Worried" section about his extreme anxiety concerning his young (28 yoa) wife's upcoming MRI. He was very clear that he was not/not posting on behalf of his wife (who he described as positive and strong) but on his own behalf, using this forum as a place to validate his own anxieties. Now, a number of people tried to gently redirect him, and to give him information (websites, other topics) on how to support his wife. A number of other people saw pretty clearly that he was using the old tactic of appropriating his wife's experiences in order to further validate his own anxieties (and pretty effectively garner sympathy). The post ended up running a full three pages, with a bunch of people chiming in to tell the young man that his anxieties were absolutely valid (thus undermining the attitude and approach of his wife, the person who was actually facing the challenge), and positively feeding the young man's anxieties. At the end of it all, the MRI was benign.
Why was I bothered by this?
--First of all, this is a breast cancer forum, not an anxiety forum. It bears repeating that the young man was not posting for his wife - she was apparently fine - he was posting for himself. He wasn't looking for reassurance that everything with his wife would be fine, but rather looking for reassurance that his anxieties were valid. He was looking for people to bear the weight of his psychological issues, so he found a forum full of people with breast cancer to take on that job.
--Secondly, enabling, feeding, validating, and normalizing an anxiety like this starts to cement in place an unhealthy pattern. What is this guy going to do if/when his wife gets pregnant? Start haunting support forums for women who have suffered miscarriages, or severe problems during their pregnancies/births? How is that good for anyone?
--Thirdly, and most importantly: during the couple of days when this young man was sucking up all of the air in that part of the forum, there were several other posters (posting for themselves) just beginning what turned out, in some cases, to be their breast cancer journeys. Their initial posts got a few responses (always from the same wonderful women, many of whom are participating in this discussion), but nowhere near the number of responses that this young man got. My point here is that reassurance/attention seekers do their thing often to the detriment of people who actually need the specific kind of help that this forum is uniquely qualified to provide.
This is just one recent example of a reassurance/attention seeker situation getting completely out of control, but there are certainly others in the same general pattern. Those people are always going to come here, and they will get a variety of responses based on the personalities and experiences of the responders - which is as it should be. This is not a medical clinic and there is no "standard of care" to which everyone must adhere. We don't hold board meetings to discuss the medically/psychologically/emotionally appropriate response to this or that new post. One of the greatest things about this forum, to my mind, is the diversity of approaches that we all take to handling our disease, and responding to newcomers with information from our own experiences is not only the most valuable thing about this site, but is also as far from "disingenuous" as you can get. Be hopeful and reassuring as warranted, but people can see through false reassurances, so be honest always. The diversity of responses also helps to increase the likelihood that newcomers hear what they need to hear and will get the kind of support that they need, since it's often impossible to predict what kind of approach will resonate best.
I'm only a year out from my diagnosis, and not yet in a place where I can join women like Alice, Beesie, Moth, Salamandra, Wrenn, ctmbiskia, and so many others who give their time and energy to helping newcomers, but I hope to get there and be able to pay it forward. (BTW, you all helped me immensely, if unwittingly, so a belated and heartfelt THANK YOU!) I also plan to use MountainMia's assessment tool: Is this person looking for information, reassurance, validation, and/or attention? Can I provide a response that is helpful and appropriate to what the person is seeking? And so forth, down the decision tree.
Okay, off my soapbox, and back to my normally scheduled programming of occasional comments that "No, not everyone on AIs has terrible (or even any) side effects" and sharing BMX experiences. Thanks to all of you for your wisdom, kindness, and generosity to new and relatively new passengers on this ride.0 -
I wasn't going to post here again, but I've been reading the posts as they've come in, and I've been thinking. My current thought is that while the description in the chart is good, "Reassurance Seekers" might not be the right name. As has been pointed out, we all seek reassurance. Sometimes that reassurance comes in the form of information ("the good news is that 90% of call-backs like this are resolved by the additional screening alone, with no further action necessary") and other times it comes as kind words and support (a BIRADs5 does mean it's likely that this will be cancer, but we'll all be here for you to help you get through this").
The people described on the right side of the chart aren't really seeking reassurance, except perhaps the reassurance that they are right about what they believe. If those who respond can't provide a definitive answer with 100% certainty ("No you absolutely do not have IBC" rather than "That doesn't sound like IBC at all"), then the answer isn't good enough and the individual falls back to her original belief.
I think most of the time most of us are okay dealing with these individuals; it's only a few situations that go bad. Even then, usually these discussions start off civil and supportive. So where and why do they go off the rails? Thinking specifically about undiagnosed newbies who fit into the right side of the chart, there are two scenarios come to my mind. One is when the poster pushes back on someone who has been trying to be helpful, becoming rude and belligerent ("You aren't taking my concerns seriously; you have no idea how much of a nightmare this is"). Another is when the poster goes over the line and says something inappropriate for the audience ("I know for sure that this is cancer that has spread and I'd rather kill myself than go through the horrors of treatment and put my family through that").
The discussion here has been about concerns many of us have in how to deal with the right-side of the chart people, wherever they are on the board, whether diagnosed or not. Many of us say that we avoid these people, but they do need support. What we really need are better techniques and ideas for how to deal with these individuals. But when it comes to the undiagnosed newbies, and specifically those who are extremely unlikely to actually have breast cancer, does BCO need to take a step back? This is a breast cancer discussion board on a breast cancer website. These individuals don't have breast cancer and are unlikely to be diagnosed with breast cancer; their health issue is 'anxiety about breast cancer'. The people responding to them all have breast cancer or are high risk for breast cancer. The mental health of these newbies is important, but this is not a mental health website. Therefore why are breast cancer patients being chastised and sometimes attacked for not dealing well with the mental health issues of individuals who do not have breast cancer? After a discussion has gone off the rails, the Moderators often step in. Is there a role for the Moderators to step in sooner, not to caution and direct the responses of the BCO members (which is what happens now), but to gently and kindly remind the anxious newbie that their anxiety issues are best addressed professionally, and that they should remember that the people responding are breast cancer patients who are simply trying their best to help?
Even as I write this, I see problems. Most of the undiagnosed anxiety-ridden newbies arrive here with a legitimate concern, which is exactly the purpose of the Not Diagnosed forum. The problems in their discussion threads arise when the level of anxiety, and the reaction to helpful, fact-based and supportive answers, is out of proportion to the breast concern. Or when the breast concern has been adequately addressed (imaging and biopsies), yet the resolution is not accepted.
Thoughts? It would be nice if we could actually find a way to reduce the number of discussions that go off the rails.
Edited to add: typhoon, we were posting at exactly the same and thinking very much along the same lines! You've raised some really good points/examples.0 -
Your soap box served you well, typhoon! I’ve been having trouble putting into words why some, not all, reassurance seekers may not be served well by bco but I think you did it for me.
“Secondly, enabling, feeding, validating, and normalizing an anxiety like this starts to cement in place an unhealthy pattern.“ This sentence really struck me as I have been wondering why some members almost encourage anxiety ridden behaviors. Yes, anxiety, stress, shock, etc. are all possible reactions to bc suspicions or an actual dx but at a certain point most of us will need to be able to deal with whatever comes our way in life even if it is unpleasant.
Your recollection of a stressed husband’s post reminds me that when husbands post they generally get lots of responses and lots of praise for their support and those who actually are going through bc testing or a new dx sometimes receive short shrift. I also think the caregivers forum may be under utilized
I realize that we come from different experiences that color how we react to things but at the very least, after one’s initial shock, grief, et al, I hope that we will encourage folks to learn and, most importantly, maintain some perspective ie: A call back on a mammo should not lead you to planning your funeral.
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Chiming in as a moderator elsewhere myself....are moderators here able to close discussions? That's what I do as a moderator when it's apparent a thread has gone off the rails, or is about to. Depending on the topic and current state of the discussion, sometimes I'll post a final comment to close things off. Closing discussions to new comments is a helpful tool for when someone is just ranting or venting, doesn't like the valid responses they are given and argues with responders, or when a slightly controversial or provocative question or concern has been adequately handled, but is constantly bumped up and added to as new people discover it and want to say their own two cents regardless of what's already been said.
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Parakeetsrule,
The moderators have locked threads and will continue to do so if they find it necessary. As this is a health related site I believe that it’s probably not an easy call to make. Yes, some threads do become redundant I don’t think they want to lock threads based on that. The mods have a fine line to walk and I think they’re do8ng a great job!
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I didn't say they should lock redundant threads because they were redundant, I was referring to moth's comment about how to handle threads that have gone off the rails: "Thoughts? It would be nice if we could actually find a way to reduce the number of discussions that go off the rails."
Adding more of the same information doesn't help an off the rails discussion and just keeps pushing them to the top of the feed. Or here, the top of the Active Topics page. But thanks for letting me know closing a discussion is something they can do! I didn't know because I've never seen a closed one.
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Having never been a moderator, I imagine that it’s not an easy decision to lock a thread. TBH, I have not seen threads locked for going off the rails but mainly due to nastiness and bickering that gets out of hand. A few threads that dealt with controversial issues are hidden,i.e. they are active but don’t appear on active topics. Not sure what can be done.
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I am absolutely in awe at the level of eloquence in these responses! But at the same time, I'm not surprised, as you are the members whose posts, in any thread, I always enjoy reading.
I've noticed on discussion boards in non-medical forums that there is a current trend to make effusively comforting comments for even the slightest issue, and to attack anyone who does not toe the line. For example, Original Poster: "My coworker looked at me funny this morning and I've had the sads all daaaay!" Responder 1: "Oh, that's AWFUL! I do not understand how anyone can be so cruel!" Responder 2: "Um, isn't that a pretty strong reaction when the coworker might have just had a toothache or something?" Responder 1: "That's harsh! We only offer support here!" Responder 3: "R2, Why would you even SAY that, how mean!" Responder 4: "OP, PLEASE don't pay attention to R2, you've been hurt enough already!" And so on. It's like a bizarre mix of who can be the most effusively compassionate while simultaneously being a Mean Girl. The first person turning a minor issue into a catastrophic event is the catalyst, and it almost sounds like they're all following a script, except for poor Responder 2, who stumbled into the scene.
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alice,
That sounds like the knitting forum I was booted out of
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exbrnxgrl, aha, then it's not just my imagination.
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exbrnxgrl, it's not funny but it's really funny that you've been booted out of a knitting forum.
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I picture a horde of fluffy Miss Marples with knitting needles raised like pitchforks.
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Alice, as a life-long sufferer of Resting B*tch Face (RBF), the "she looked at me funny" analogy really resonates. Basically, the angrier I look, the emptier my brain is; if I look like I'm plotting the mass murder of everyone in my immediate vicinity, it's a certainty that there's virtually no brain wave activity going on at all. RBF has caused more than a few misunderstandings. It's a burden, it really is
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typhoon, I've almost gotten fired in my younger days for my default RBF. Looking through old photos, I had it even in grade school! Now I'm thinking of some of the hyper-anxious new posters who are convinced of the worst just because "I saw the look on the mammographer's face! I just know she saw something horrible!" Good grief, if I'd become a mammographer, they all be terrified.
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What a great discussion. Thanks to everyone chiming in.
One question I have is, are there actually many people who leave because they think they've been treated badly? Obviously, any is too many. But people come and go all the time, especially the "not diagnosed but worried." They come, ask questions, get their diagnosis (mostly benign!!) and are never heard from again. Has anyone surveyed them to find out how they evaluate their treatment by us? No? I thought not. So we don't really know, do we, about all the people we supposedly offend by ... whatever our supposedly harmful comments are. I myself have rarely seen comments to a new member that I'd consider disrespectful, and even less often have I seen members state they were leaving because they were treated badly. (Never. Actually, I've never seen that.)
So maybe this is a solution in search of a problem. Maybe this thread is a great way for some of us to consider how we treat others, and do we try to maintain a level of respect that's appropriate for the situation. Other than that, I doubt there is more to be done.
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I don't think new members are leaving in droves because they feel they've been treated badly, but I have seen more than a few do that. If someone deletes all of their posts that's a clue that they're unhappy or if they ask the mods to delete their accounts. I have also been bco slapped by the mods for making a comment that they think may have contributed to their leaving (comment was on the controversial topic of spouses using the the collective “we", as in “We are having surgery tomorrow." I know the mods are very eager to make sure that new members don't leave due to our comments., Frankly, I am not sure that there will ever be a solution that makes everyone happy, nor do I expect one!
PS: I agree that the majority of folks who leave bco do so for many other reasons!
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MountainMia, we somewhat know because people complain to the Moderators. The Moderators then may comment in thread and contact the offenders. I've been contacted a few times over these years. Most recently it was because I didn't take a newbie's concern seriously; if I recall correctly it was one of those situations where factually there was a 99% chance that this individual did not have Stage IV breast cancer and I dared to explain this. In the end I don't think she required anything more than a callback and then all was well.
I know that I am not alone in having been contacted for violations of this sort.
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I've seen a few snit-flouncers, but not many. There's one who reappears until asked if she's been diagnosed yet, then she vanishes again for awhile. She seems to be addicted to breast cancer, without actually having it.
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This thread has brought up a lot feelings for me and I thought it best if I just 'shut up' (as Will Rogers said 'never miss an opportunity to shut up". But after reading this thread several times, it just hit me. I personally believe that some (not all) of these 'attention seekers' are actually trauma survivors. Trauma affects the brain and trauma can cause PTSD. If you were to see me on the street, you would probably think of thats a normal or regular or whatever person but when I am triggered by something I totally go down the rabbit hole and it takes me a long time to get my equalibrium back. Another thought came to me and that is that you never know when someone is suicidal. So letting it go now. Hope you don't beat me up for saying this. Once you get the hit that someone is going on and on, just don't respond. I've been on this website for coming up on 13 year years and it has meant the world to me. So much help and I've learned so much.
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