breastcancer.org's Mission.... or not?

NattyOnFrostyLake

Yes, Light, "enabling" is a value-laden word. I must be guilty for enabling everyone then since I respect other people's choices and would not sneer at turmeric or coffee enemas the same as I wouldn't sneer at the choice to poison cells.

Inflicting a sense of morality onto people's health choices does not persuade them of one's position. Just the opposite. It just makes them think those riding the high horse are defensive and insecure in their intolerance.

I hope this discussion is studied in social psychology classes. Such a great example of the workings of intolerance/tolerance.

NattyOnFrostyLake

Voracious reader,

I'm afraid I couldn't read your post because it was a long block of print. Paragraphs or multiple posts may help you get you point across more clearly.  Just a suggestion...

wrenn

i tolerate long blocks of print.

NattyOnFrostyLake

Wrenn,

I'm so glad you can tolerate long blocks of print. I'm legally blind in one eye.

I even have trouble reading poetry!

Bren-2007

Hi Gals,

Voracious ... your last couple of notes are excellent and "right on target."  After reading your note just above, I clearly understood the difference between "enabling" and being supportive.  I think this was the point Beesie has been trying to make.  The problem that I see is that a drama queen is always going to be a drama queen ... and no amount of "supportive" comments will make a damn bit of difference.  I see it as a personality problem rather than an intelligence problem.

I don't have any suggestions for how to deal with those kinds of posters, except maybe try to figure out which ones are just seeking attention and which ones are truly scared and need some information .. and limit your responses to the ones you can actually reach.

I do agree with the poster above who was talking about being tolerant ... that goes along with the only suggestion I had yesterday, and that was that we try to have grace for each other.

hugs,
Bren

lightandwind

VR, sorry for the tone and missing your point. I am working on two computers right now, editing my post to convey more accurately what I had intended to say. I don't know anything about John Waters, I'll have to admit.

To address your point in your post more specifically, I think if we do our best to respectfully deliver sound information to others, then we just have to feel good about the fact that we did what we could to help. if someone reads information that seems incorrect, and is worried about future sisters reading it, then they can respectfully provide additional information. The onus is always on the person to make their own choice. A person's choice in treatment is unique and personal to them, and though I may try to deliver information, what is done with that information is simply beyond my control and that I accept. I won't suddenly start being mean to them because they are going down a path that is different than one I would choose.  

voraciousreader

Natty.....Respecting every individual's medical choice is very noble.  Since you couldn't read my long post, I will attempt to sum up what I said in as few sentences as possible. Our sister with the "favorable" prognosis INSISTED on having chemo.  We both respect her decision.  However, as Dr. Brawley pointed out in his book, How We Do Harm, with respect to his patient who was doctor shopping for a practitioner to give her chemo, he tells us that the risks of chemo outweigh the benefits, which is what our sister was told by three SKM physicians.  Now, remember, when individuals become physicians, they must take a vow, "First, do no harm." So, if they agree to give her chemo, then they are not honoring their vow.  Regarding Dr. Brawley's patient, he later found the doctor who respected her decision and in fact, gave her the chemo.  When he spoke to the doctor, he asked why he had done it. The physician told him that she was going to get it anyway, so he thought he could provide it as safely as possible.  But then Dr.Brawley said, "But there is no safe way to give it to her because in her situation, THE RISKS OUTWEIGH THE BENEFITS.". So, this physician lost Dr. Brawley's respect AND broke his oath because he respected the patient's decision?"

My issue with the sister here was that she was convinced that the doctors were "missing" something and articulating a lack of respect for their opinions.  And worse, she was potentially causing harm to other newbies by insisting her Oncotype DX score was "on the high side.". Sometimes by respecting someone's choices can harm other people.  I think what Dr.Brawley was pointing out was that that woman's choice was so respected by the physician who gave her the chemo, that it ultimately devalued the respect Dr. Brawley had for his colleague and worse, it devalued the medical profession which requires physicians to first do no harm.

A very,very, very slippery slope..... 

AmyQ

Beesie, I am so grateful for all the time you have spent enlightening, educating, calming and reassuring hundreds if not thousands of us here on breastCANCER.org. Thank you thank you.  I'm afraid this post has gotten the best of me and it seems that no matter how hard you try to clarify, there are going to be contrarians. You say up, they say down so I'm going to take a break from the discourse and enjoy my summer in Minnesota.  Blessings to you for everything you do to make BC.org a better place for those of us with BC. 

Amy

vbishop

All -

I still think some are missing the point.  It took me a while to understand the true issue and now that I understand why some are upset, I am not sure what can be done about it.  Please see Beesie's earlier response to my reply that helped the light bulb go off about the real issue, about 15 posts prior to this one.  Sorry it took me so long to understand it.  It has nothing to do with conventional vs alternate treatments.

Imagine this:

 Undiagnosed posters are convinced that they have an aggressive form of breast cancer.  Knowledgeable voices of reason chime in to encourage them to seek a medical opinion, all while pointing out, gently, that what they are describing doesn't sound like breast cancer and provides links with proof.  Enter another undiagnosed person who is also convinced that they, too, are suffering from the same aggressive breast cancer, with nothing to back up the opinion.  OP ignores the voices of reason and sides with the other undiagnosed person.  Begin fear frenzy.  Add more undiagnosed women with little or no knowledge to the mix and you get a real feeding frenzy.  Now enter the lurker with a simple rash.  OMG!  Now they think they're gonna die cuz they have IBC based on the posts from undiagnosed posters.

As members, we want to be there for each other, share information, offer encouragement.  We don't want to add to the fear or pass on incorrect information.  Intentional or not (I prefer to believe not intentional), there are some undiagnosed posters that are spewing incorrect information or adding to the "fear frenzy" of other undiagnosed posters. 

That's the issue.  How do we, as sane rational adults, stay true to the intent of these boards (inform, encourage, support) while discouraging fear mongers?  I'm not sure we can. 

 

IllinoisLady

Not wishing to start further discourse because I think there is some sound thoughts arriving such as the onus being on the person taking in the information, hopefully being able to use it to make a choice that suits him or her. 

I think the last few words were very unnecessary -- about talking mean to people taking a different path.  I would have to go back and re-read, but I felt so much of this angst was settled a long time back.  On the Alt. thread.  Since that isn't even the focus for this thread, it would be so kind and understanding if it wasn't brought forth. 

I had and still have hopes that people with much to give can work fruitfully with the mods to make things much, much better.  Rehashing meanness and continual 'harp' cycles  on something that is pretty much not a part of the topic here is imho just causing delays and disruptions and taking the focus from attempts to make good, strong positive inroads. 

That is all I'm going to say. 

Jackie

pip57

I am in the middle on this topic. 

 My idea of not enabling or condoning someone about their different choices is to simply ignore them.  Yes, sometimes I get caught up in the drama, but I do try not to.  

We also have to remember that each person brings their own life experiences with them.  If I suggest that someone ask for more tests because mammos can miss tumours, it is because that has been my experience.  Others would say that if a mammo didn't show anything then just go enjoy your life and quit worrying.  

For me, the issue is the extreme cases were, IMHO, a poster is clearly baiting or looking for attention.  I think we should just avoid them. The only people who will continually engage them are probably looking for the attention as well. 

I do understand the concern for the newer members who come across some of these threads.  But we, as fellow internet posters, have no control over their beliefs or actions. We have to trust that there is more to their lives than this forum allows us to see and that they have other influences in their lives that hold more significance than we do.  After all, they obviously have access to the internet and the wealth of information that is available to all of us.  

barbe1958

Good wrap up - now how can we make sure there is no longer feeding frenzies? With a strong voice of REASON. With tough love! That's what the OP's do NOT want to hear! They want to be validated for their own imaginings. That is what we've all been trying to say here for 3 days. If someone posts about something that the rest of us knows is not reasonable or optimal, we WILL say something! Just agreeing to the OP is NOT being supportive or nice, it's being IGNORANT. This is not patty-cake people. This is real life for those of us who have been diagnosed with cancer!

Lily55

I respond with a different perspective.  I was on a different forum before coming here for many months and had lots of support but I left that after I was totally lambasted for refusing chemo.  I was also heavily criticised for suggesting people who were really struggling expressed their feelings rather than "being positive" and bottling them up. I was not asked why i made this decision, what my reasons were or anything at all I was just attacked for "refusing treatment for your cancer" so I was not worth spending time with or responding to.  At that time I was particularly low and it absolutely devastated me............now I know that my choice was right for me, and it was not one taken easily........

Beesie was someone who responded to me early on and I have always found her to be factual and respectful, and I am hyper sensitive to criticism for my decisions (or rather I was, I see no need to defend them now).  I think VR summed it up very well, the issue is enabling rather than supporting, and i am someone who has told a newbie to "insist" on an MRI where lobular cancer was a possibility.......but once someone is diagnosed as benign then I wish them well and cease to respond as I know about the dark side of breast issues not the light. 

I am saddened that this thread has had so much personal agenda coming in and that BC.org has become a place where people seem to seek to blame rather than appreciate difference.  I have not agreed with everyone here and I get particularly frustrated that some people who are clearly anti alternative treatment hang out and comment or criticise threads going on there but then I remind myself that we can all only do what we feel is right for us in conjunction with our standard or alternative practitioners, or both. 

NattyOnFrostyLake

Calling people "ignorant" is exactly the kind of meaness Lightandwind was talking about in case anybody needed a reference,

Not kind. And not persuasive. I gather it makes the poster feel better? I'd like to know why? Can you educate me?

voraciousreader

bishop...you summed it up very nicely!  But I do have a place where we can begin...As I said in my first post, quoting David McCullough, Jr...You are Not Special.  I value the rights of an individual, and collectively I value the rights of all. But we all need to step back, take a deep breath and ask of ourselves, is there room in our psyche to accept that sometimes when we think we are being noble by respecting the rights of one person that what we really are doing is potentially creating  part of another problem?  

Tomboy

Wow, lily55. I had no idea that that had happened to you. I always liked your posts when you were going through hell, because they were so raw and heartfelt, and yes, emotional sometimes. i always just first wanted to run up and hug you. I am genuinely sorry that that happened to you...

barbe1958

Natty...the VERY FIRST description of "ignorant" is shown below, copied and pasted DIRECTLY from an online dictionary. People misuse the word to mean "stupid" but there are those of us who know the original meaning:

ignorant

ˈignərənt/

adjective

1. 
   
   lacking knowledge or awareness in general

barbe1958

So I hope that does "educate" you (your words, not mine!). I also didn't say the person was ignorant, I said the reaction of the person was ignorant. It's these kind of small nuances that make it confusing for people reading posts too quickly. My point exactly about how information gets misinterpreted!!

NattyOnFrostyLake

Yes, Barbe,

That's exactly my point. Name-calling someone as "ignorant" is probably not a helpful or kind thing to do in a forum for people with a life-threatening disease. It's dismissive and demeaning.

My question is to you is, why do you name-call when you have other ways to reach out?

NattyOnFrostyLake

Someone said to me this morning, "meanness, just like worry, is a learned behavior. We use the behaviors we learn..."

barbe1958

I THOUGHT I was talking to intelligent members here who understood when I used the term "ignorant" to mean lack of knowledge. And then I actually had to post a dictionary definition of the word to show that it is the REACTION that was ignorant, not the PERSON. Unfortunately, some people STILL refuse to read the actual WORDS that were typed and are STILL ignorant of the meaning!!!! 

This is SO bloody beneath me!!! It is very difficult to continue this conversation with people who are determined to find fault with every post. I'm washing my hands of this thread.

Edited to add: I have received numerous PMs because of my posts on this thread by ladies THANKING me for saying what they feel but are too afraid to post! That alone validates why I continue to post in this forum.

vbishop

Ladies -

Pull the claws back in.  Remember Aretha Franklin:  R-E-S-P-E-C-T.

 

NattyOnFrostyLake

Barbe,

I'm only blind in one eye. You don't have to use caps and exclamation points.

I'm sorry you feel you can't explain why calling someone "ignorant" is helpful. I would still like to be educated by you as to why you choose these words. Sorry if asking questions is a problem.

Edited to add: Don't we all just get tons of PMs telling us how great we are? (irony)

barbe1958

OMG, I just refreshed my page and couldn't believe the post!!!!

Natty, obviously I DO have to post in all CAPS because you are not READING MY POST!!!!!!

I. SAID. THE. REACTION/RESPONSE. WAS. IGNORANT. NOT. THE. PERSON.

barbe1958

IGNORANCE MEANS LACK OF KNOWLEDGE.

NOT KNOWING THE PROPER USE OF IGNORANCE AND/OR NOT FULLY READING SOMETHING YOU ARE REACTING TO DOES SHOW IGNORANCE!!!!!!!!!!!!

NattyOnFrostyLake

Did I mention I'm only blind in one eye? 

Obxflygirl1

oh my gosh.....this is my first experience on BC.org reading barbs and not so kind remarks from one poster to another.  I'm embarrassed for all.

Beesie

Gee, here we had a good discussion going for a while, with lots of interesting opinions.

The sarcasm isn't adding much to the discussion, nor is it helping maintain a respectful debate.

Let's not have the Mods lock this thread because of the bickering.  Please.

River_Rat

The things described here are why I tend to not refer anyone here. I did mention the site to my sister when she was dx'ed but cautioned her to be sure that if she used the site she verified any information she read on the board through reliable sources. And we both are in agreement over what would be a reliable source. It sure wouldn't be someone touting coffee enemas.

Ozzygirl

This thread has two different things going on right now. One being the original issue of concerned but not diagnosed people and the second being the alternative section.

For the not diagnosed area - I am going to suggest something radical here and I ask that you read it all the way through before firing off a response.

Part One - Members can only START threads in not diagnosed and not post on other threads within that section. This restricts them from cross posting and bouncing from thread to thread in the forum and potentially derailing other threads and causing concern for others that lurk (good point on the lurking as I am sure for every member that posts there are a buttload that just read and never post) They would have regular posting in other areas as then if they are diagnosed they can then post in general.

Part Two - limit the RESPONSES to the threads in the newly diagnosed section - this is the sticky one but if there is a large group of identified posters that have additional posting capabilities then this group can moderate for want of a better word the posts and limit the frenzies and then valid information does not get lost. I KNOW this would be loaded as people would be crying well how do you identify who should be posting and that would be something that needs to be thought about.  The people that respond to the posts in not diagnosed should also be wary of what they are answering. For example. General breast issues could be answered by anyone in the response group.  A person that has IDC or DCIS should probably not be answering questions about IBC. I know people will be upset about this but think about it. Someone who has IBC has probably researched the heck out of it and has the big picture in mind whereas someone with IDC may exacerbate the issue by not fully understanding the nuances of the disease and cause further consternation.  I am not talking about one person being able to answer but a group of people are capable of answering unemotionally and consistently and without prejudice.  

If someone does not want to let go then maybe that is when the people that sub moderate the area step in and ask for assistance from the moderators and then they can make the determination about whether someone is potentially causing themselves harm by continuously posting.  

I don't think it is bc.orgs intention to have people hang around forever and drive themselves into a tizzy but to provide an avenue for concerned individuals to be able to get their questions answered.

I am sure I am not thinking of everything but maybe its a start.