How can we make this truly safe, supportive, judgement-free?
Comments
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Maud,
I never mentioned your name or referred to you in any way. Why did you think I was asking you or anyone in particular for an apology? My school district has a bullying policy which would be too lengthy and off topic to go into here. Rest assured, it is well handled and I appreciate your concern for our young people. I don't think I changed the tone at all by calling for mutual respect from all and paying a compliment to Kat. I very much dislike any continuing efforts to maintain polarization. I truly want it to end!
Caryn -
First, I used the word goop because I couldn't remember the actual name. Salve...I stand corrected.
I think the alt forum stirs so much passion because it is just a bit too far left of center for most. Religion is accepted by many, conventional treatment is accepted by many because they are considered "normal". Black salve and other alt treatments (not all) are just a bit too far out there for many to jump on board. However, many want to check out the threads to see if there is something they may consider close to center. Unless and until they find something realistic to them...something not considered unproven...they will have a skeptical mind. If something strikes them as crazy, they will try and warn others because they come from a place of good. Does the good always come across as caring? No. But do they mean harm? I don't think so. Most gals who are alt proponents probably feel very defensive about their position because they are forced to defend it constantly. That defensiveness can come across as nasty retaliation. Like someone stated earlier, the "she called me stupid first" defense isn't a good one. A little civility on both sides can go a long way.
Just my two cents worth. -
ThatsLife, I hope you are doing well. Don't know if that's the study you were referring to
Alternative Medicine Draws The Educated - by John A. Astin
People who seek care from alternative medicine are better educated than the medical mainstreamers, according to a national survey conducted by John A. Astin, a researcher at Stanford University School of Medicine.
Surprisingly, a negative attitude toward or bad experience with conventional medicine did not seem to make people more likely to choose alternative therapies. Users of alternative treatment included roughly equal percentages of people who were highly satisfied or highly dissatisfied with conventional medicine. Nor did such factors as age, gender, race, ethnicity, or income make a difference in the survey.
http://jama.jamanetwork.com/article.aspx?volume=279&issue=19&page=1548
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Mardibra, this forum stirs passion because people have different views. Alternative people are a minority group on BCO. Please someone give me one example of where a dissenter has voiced their views and converted someone to conventional? The only time that might happen is when the converter has been open to both all along. Those already using an alternative treatment must first have come to a decision for any number of reasons.
The response of criticising doesn't do any good and can harm on an emotional level. I just can't see any justification for it. Women are frightened off and then go it alone without any feedback which may include unwanted side effects. They are more likely to stop using a treatment if one of their alternative friends gives genuine feedback of side effects from personal experience than if it comes from a dissenter who hasn't used the treatment themselves and may be biased.
I just don't see how any dissenter is helping when it just pushes the intended receiver to move further towards alternatives. No matter how "good" the intentions are, the end result is what counts. Alternative women are distressed and leaving the boards at a time when they most need support.
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Yorkiemom, I don't want to stop anyone from asking or giving their opposing view as long as it's stated as their opinion. Facts are also welcome as long as they are stated without judgements that may upset those making other choices. Many alternative women have said the same thing on this thread. I'll quote some judgemental expressions used to try and scare Chilli off.
"this is a scam... wishful thinking... You have everything to lose... What you are doing is a recipe for disaster... "
all said in the same message to a woman who has taken a very difficult and painful decision as all other options have run out. That is so insensitive, I'm disappointed the post wasn't removed or edited to prevent damage.
A kinder response might have been... I'm really concerned for your welfare, the following risks are the ones that could cause harm... then factual known side effects could be quoted, closing with some emotionally supportive statement such as... I wish you well, take care etc.
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Seriously:
"I tried to read a Hulda Clark book once but it was really technical and way over my head. If her methods work, then the parasite theory is a moot point. After all, pain killing tablets still work regardless of whether we understand what exactly caused the pain"I'm off to seek my fortune in being a commodities trader. Never mind that I don't have a head for math and education is for the elitist. I have read the Secret and if I wish it hard enough it will become so.
I know it's been 3 weeks since I have posted but I have suffered depression because I failed at trading commodities.
My son took a class in critical thinking so I think that I will become an expert critical thinker on the boards and call everyone out on their logical fallicies. Never mind good critical thinking skills take years to refine, I just wish it so and that makes it so.
I would fail a high school chem and bio quiz but I am going to act like an expert in diseases and cancer. I will state no diseases are curable except for infections and I will make a bizarre list of diseases that are in fact curable such as diabetes and I will add catorgories like dermititis like it's one disease.
I will pretend that I flunked out of naturopathic and nursing school because they are elitist and I am a commoner.
Can you say tooth fairy science? Seriously, Hulda Clark was way over your head?
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Yorkiemom, I agree with you 100% with your theory on mental illness and the altie boards.
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I guessed someone would query diabetes. It's not curable either in type one or two. It can be treated with medications which must be taken for life which was the point of my post. A new study released a few days ago shows that those with pre-diabetes may prevent pre-diabetes from progressing to diabetes by bringing their blood sugar down to normal, even for a short time with diet and exercise. Not a big chance, but worth a try. Good news hey?
9 June 2012
Aggressive pre-diabetes approach needed, say researchersI wrote dementia to save typing out the different types as the list is already so long. I welcome any respectful corrections to the list.
ETA - I should add lymphedema to the list of manageable but incurable.
Now if only Alzheimer's and Diabetes were curable I could get my mother out of the nursing home.
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Joy, yes that study is very encouraging, and it is another good reason to aim for stable and low blood sugar.
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Moderators, please delete BlackCat's post above relating mental illness and posters on this forum and I beg you to prohibit this poster and the one she is addressing from posting here. THIS HAS GONE FAR ENOUGH !!
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The big problem with the alternative threads is that a newcomer may be lead up the garden path and encouraged to undertake treatment that is not proven or could even be dangerous. Prime example being Himalaya, who read about the black salve treatment and thought it could be an alternative to surgery. Chillipadi had reached a point of no return and I support her choice to try this especially as her tumours are all over her chest. Now if Himalaya tried this treatment, goodness knows what she would go through to remove a tumour under the skin - certainly a lot more painful than traditional surgery. In Chillipadi's case, she did do the Budwig protocol in lieu of having surgery and where did that take her? So, if someone comes here and is encouraged to do the Budwig Protocol, what might happen to them? What's wrong with someone pointing out the potential danger of some of these alternative treatments?
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As long as you point out and compare the real and proven dangers of conventional treatment you so adamantly advocate for. My own onco would question your motives.
Himalaya is gone and probably ordering salve therapy as you speak. NOTHING you say to discourage anyone from the path they have chosen matters. You give yourselves way too much credit.
Most readers on BCO come to the Alt forum AFTER reading the horror stories on the conventional boards.
ETA - plus you are overextending your welcome (see how polite I can be) and in direct contravention of the moderators' directives:
We'd like to perhaps suggest that those members who really disagree with the use of alternative forms of treatment not participate in the discussions in this forum.
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Suzieq writes:
"What's wrong with someone pointing out the potential danger of some of these alternative treatments?"
SuzieQ, then you're saying it's okay for the alts to point out the dangers of conventional treatments?
If pointing out "danger" is okay on BCO, I guess we can go round to the various conventional threads and point a long list of documented dangers?
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Joy, in case you and eve haven't noticed, and you may not have, there can be just as much antagonism on other forums, yet mods don't have to delete posts and lock down threads. Check out "Denied Treatment for DCIS" to see what I mean. Passions, including my own, run very, very high there. I have been involved in a few heated discussions because my low Oncotype score dictated I not get chemo, despite two positive nodes. My point is that while other forums seem to deal with conflict and opposing opinions, it does not appear to be tolerated here. Again, just sayin'.
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Yes Yorkiemom I do realise that thanks. You bought up a really important point. Sorry I didn't acknowledge it. In other forums I assume the subjects being debated are in the appropriate forum, so the DCIS forum is the right place for that discussion. In this case people who don't agree with alternatives are coming here just to judge and try to correct us. It's tolerated to some extent but when people who need support want to leave then it has gone too far. If someone is being criticised for their treatment choice then that shoudn't be allowed and the moderators have stated this;
We also cannot tolerate disrespectful discussions as it pertains to individual treatment choices.
It's such a shame that it happens anywhere and maybe the whole of the forum needs some additional form of moderation. I imagine it's been discussed before on the Comments and Suggestions and wonder why it still happens.
Actually I didn't take the recommended treatment either but haven't argued about it. That's our right as patients and it's too late now anyway. I'm pretty philosophical about it.
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OK, but Joy, there are people, like me, who do use some alt things and is genuinely interested, but who ALSO questions, everything.
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Joy, I believe the DCIS OP posted to get support for her decision. Instead, she got almost 100% criticism (for good reason imho). She might have been better off posting on the Alternative forum!
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But questioning something in a genuine and civil way is quite different that throwing around inflammatory words ( mentally ill, high, quacks etc) or making demeaning sarcastic comments. It is the tone and level of civility which seems to steer things in a negative direction. I am a little frustrated at this point but badly want this thread and all other to truly be safe an supportive. Caryn
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Maud, to move the discussion here - in this thread it has several times been stated, in various ways, that choosing alternative treatment is a matter of belief, akin to religious belief and therefore should not be questioned.
I got told off very severely here for asking what the active ingredient in some herbal treatment was and how it worked. I was then further chastized for asking about its apparent toxicity.
This suggests to me that some people here consider any and all questioning of any alternative treatment to be anywhere from rude to bullying (another word that has been bandied about in this thread).
I appreciate knowing this, and therefore suggested a separate thread for questions and discussion.
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Exbrnxgrl, if you read the thread I referred to you will see the words "crazy" "playing russian roulette with your life" and accusations of the OP being a deadly influence on newbies. Of course I agree with all those sentiments, but my point is that the same kind of vitriol exists in other forums as noted here.
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If you would all read back to other posts in other forums you would see it's the same person keeping the animosity going (or starting it) over and over. I can't wait to show my family doc (who is also a cancer patient) and our oncologist who recommends the alternative that we're both using, that we're all mentally ill. I got a kick out of that...I'm sure they will too.
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I think that Momine is dead on. Questioning everything: proposed treatments, conventional and alternative is the only autonomous, safe thing to do. Each of is responsible for making rational decisions about our own health care, as mothers, parents, care providers many of us are called upon to be substitute decision makers for members of our families who, because of age or mental incapacity, cannot make or express these decisions for themselves. It therefore behooves us to open our minds (even if we have to pry them open) to the world of possibilities out there. But, and this is a big but, we have to apply the same sort of rigourous questioning and inquiry to all possibilities. For alt therapies and conventional therapies we need to know the correct name, appropriate dosing, the possible means of action, expected side effects and less frequent ones... It is easy to find out about conventional therapies because they are what surround us. The alternative therapies need more seeking out. That is why I come to this discussion. To learn from those of you who have significant experience. If I ask questions am I being disrespectful or just doing my job as a well informed consumer?
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Yorkie, poor Rima posted on the conv forum and got attacked : "crazy" "playing russian roulette with your life" and accusations of the OP being a deadly influence on newbies.
You say: Of course I agree with all those sentiments
YOU HAVE NOT HAD ENOUGH AND BRING THE VITRIOL HERE, WHAT IS YOUR POINT ??
How insane is this going to get ?
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We'd all like to feel safe. I certainly don't, but I won't be intimidated by anyone.
Momine, I welcome questions and others have said the same. I can't imagine you'd say anything to upset anyone!
So, any suggestions what we can all do to feel safe?
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Joy, my suggestion is "Open your minds and let the good times roll."
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Momine, again, it's all in the tone and manner
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I feel a lock up coming on. Please calm down everyone. Maybe some alternative form of relaxation might help. Valerian tea anyone? A nice massage? A good comedy?
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"Go with the flow. Don't sweat the small stuff. Everything is small stuff."
Written to remind myself as well as others!
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Ha.. Blue, you must have known what I was about to post. How about some sexy Jim Morrison music.
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Momine, please stop trying to make your point that exploring or using alternative treatments has its basis only in belief, as prayer does. I only noted that prayer is considered complemenary treatment in cancer leaflets and information booklets. I understand what you are trying to imply, but i think we all believe our cancer therapies are going to work for us, or we wouldnt go through with them conventional or otherwise. I think most of us look for evidence of efficacy with a treatment, and dont base our choices on belief only.
Re those who feel they cant 'ask questions' or 'warn' people: I would suggest that most people on the alt forum encourage and enjoy discussing the pros and cons of supps/therapies/diets etc. I trully believe it is the tone only, the sarcasm, the ridicule, and sometimes coldhearted comments that have caused this issue. Not the questions, not the need for evidence, not even the warnings, just the approach.
Blackcat: you spoke of impositive's demise? has she passed away? i am always thinking of her, and wondering how she is, it is very sad if that is the case...
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