Komen is sexist and disrespects bc patients

1Athena1

Thanks go to Coolbreeze, who found this and posted it on the stage IV thread:

http://fairoaks-carmichael.patch.com/articles/survivor-heads-local-susan-g-komen-affiliate#comment_5135797

It is an interview with a Komen official who spews the usual Komen tripe about a 98 percent survival rate at five years, a positive attitude, etc...

A lot of comments have been posted. The site is a small, little known news outlet in northern CA but it's where the interview takes place. I wonder: if more of us post it might gain some more traction in the social network world and perhaps media that cover focktober.

At the moment, most of the people posting comments are metastatic women. But I think we should ALL be angry. Not only on behalf of sisters who routinely get ignored (hell, Komen doesn't even have a friendly url on its site for metsters!!)but on our own behalf. Some of us may end up stage IV -- ALL of us know that attitude has nothing to do with it. ALL of us who have put so much hard work into managing our desease should be angry at the Komen simplification of bc as a disease that you can beat if only you think happy thoughts.

I am as girly as it gets and will NOT tolerate an organization that asks us to be pretty, passive and pink. I have never been treated with so much sexism by any man as by Komen, a so-called woman's group-- has treated me. One more reason I avoid women's groups.

So I invite you all to read, post, share and re-tweet if you can. Komen needs to know it is an insult to ALL patients.

Early stagers, let's take advantage of this month to show Komen that we stand by all women diagnosed with the disease - whether with 1 mm of microinvasion or stage IV with mets to lung, liver, bones and brain.

We are all on a continuum, and as long as the likes of Komen manipulate us for their PR needs, there is no safety that prevents women from passing from one side of the continuum to the other.

We are all hopeful, but fairly helpless as long as Komen dominates the agenda

We are all feminists and will not put up with pink shit and smiles any longer.

Thank you for listening

(waving to annettek - whose name I just saw and have been missing from the friendship thread.)

ProudMom_Wife

Thank you for letting us know about this article.

purple32

This is such BS! 

I have lymphedema and someone recently made a remark to me about being more positive or else ' something bad might happen to me " .   Hello ?  It has!

A gal on this BC forum sent me this link to the perfect answer right here on our forum.  The <B> are mine.

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“Positive Thinking”   http://www.breastcancer.org/symptoms/understand_bc/fears/ask_expert/2002_06/question_04

Can cancer recur because of fear?

---

Question fromfreebird: Can you cause your cancer to come back just by being afraid that it will?

Answers -Rosalind Kleban, L.C.S.W. I am glad that this question was raised, because I'm sure that is on the mind of the majority of people. It is a very popular notion in our culture today that if you have a positive attitude you can get rid of your cancer, or that you never get it or that it doesn't return. If you think about it, that notion is truly an oxymoron. An oxymoron means two things that don't go together—like "jumbo shrimp." The reason I call it that is to think about telling somebody what is the worst news of his or her lifetime and then ask them to be positive just doesn't make sense. Having bad feelings and down days is neither good nor bad—it's just normal. The only people we ask to have a positive attitude at all times are people who have had cancer. I can be miserable all day long and nobody is going to reprimand me about being positive. You only 'have' to be positive if you have cancer.

Having that philosophy or notion or belief is like living in tyranny. What it does to you as a patient is that on days that you are down or depressed or sad or anxious or worried—which is normal—you will feel even worse because you have accepted the notion that those are bad feelings. You need to work hard to get rid of that notion. It is not fair. It is putting a burden on the patient, while it serves many good purposes for the people who are saying it. If you are going to be happy and positive all of the time, then I don't have to worry about you. It also leads me to believe that if I am positive I will be fine. The philosophy serves everyone exceptthe patient.

You need to know that people will tell you that you need to be positive. You need to be prepared in how to handle that comment coming at you, and that is something that you want to do in a way that is comfortable for you. What I think works is that when someone tells you to be positive, suggest they walk in your shoes first. And inform them that when people speak to you that way, it's really not helpful. You need to protect yourself as much as possible from that theory because it is burdensome and hurtful. A bad attitude will cause only one thing and that is a bad day. The best reason for having a good attitude is that on that day you will enjoy yourself. But neither the good nor the bad attitude will affect the illness. It will affect the quality of the day that you are having.

Your fear is just the natural outcome of having this diagnosis. It will not cause the cancer to come back. I work with a thousand women a year and I have never met one that doesn't suffer from fear, either enormous or very enormous. It's normal. Not bad, just normal. It will have no impact on the course of the cancer.

On Wednesday, June 19, 2002, our Ask-the-Expert Online Conference was called Dealing with Breast Cancer Fears. Rosalind Kleban, L.C.S.W. and Marisa Weiss, M.D. answered your questions about aspects of breast cancer that cause concern.

Anonymous

"We are all feminists"

Athena, no that is not true. We arent all feminists who have BC and I certainly am not.

ALL of us know that attitude has nothing to do with it. ALL of us who have put so much hard work into managing our desease should be angry at the Komen simplification of bc as a disease that you can beat if only you think happy thoughts.

I wish your 1st sentence was true but many people on this site spew the "keep/stay positive" garbage. That said, I agree with what youve said here on "positive thinking" absolutely!

It seems to me it's usage is something thats not synonymous with a certain group of people. In other words people use this insideous phrase right across the board.

SO-CALLED Positive thinking is RUBBISH. Pretty much most religions people go into they know theyve done so. Positive thinking is NOT one of them. The world has been conditioned into using this hideous phrase. If you want to cut to the chase, at the base of it all is SELFISHNESS. I used to spend a lot of time hating this phrase with such unbridled passion it would make me angry enough to spit tacks, now I just educate people when they say it to me. If they don't like it well too bad.

lemon68

Thank you for this post, it angers me also. I hate hate hate the whole pink thing. I have always been against the S Komen propoganda, not just because of my BC DX. It has fueled my fire though. Everytime I see one of those pink ribbons I want to throw it down and stomp all over it!!

The idea that there is a switch on our cancer cells that says" hey she is thinking positive today, I guess I will quit slowly destoying her" is ridiculous. I am up and I am down, thats the way it is and I have a right to feel however I chose on each day. The think positive and your so strong BS really gets me riled up. Of course we are strong, would you say to someone"hey, you think negative and your weak good luck getting though this. UGH...

FireKracker

Oh boy...don't even get me started..I hate,hate,hate everything that has to do with komen...I despise the color pink and I will shout it loud and clear to anyone who will listen to me.

I have a shirt I wear in October that says Focktober just ask me..lots of people ask me and I spew komen big time

And the think positive is the dumbest thing I ever heard.

I will get the word out.Thats a given.

Thank you for this thread.

grannydukes

gillyone

I was a little surprised to see this old thread receive new life and went back to read the article and comments. I am SO proud of our stage IV ladies (I recognised a lot of names) for taking the time to make intelligent comments. Thank you from all of us.

Lily55

This became such a mantra they did a study on it expecting to find a correlation between positive thinkers and survival and what they actually found was those who authentically EXPRESSED their emotions had better outcomes ( ie all emotions) so yah boo to Komen.....

ReneeinOH

Being so new to all of this, my eyes have been widened.  I had been suspicious about Komen--I work at a grassroots not-for-profit, so glossy, glitzy n-f-ps always make me question how (well) the resources go to serve its cause.  The reason they promote the lines they do is that they WANT to show progress, they know people and corporations give to causes that are effective.  

I am dismayed that so little progress has been made for a cure.  Seems as if we're getting clearer understanding about how to treat early stages (and how much of that is to public and/or foundation dollars?).  But not really making any headway on understanding why BC metasizes (or why the hell it showed up in the first place), much less finding a cure--THAT is the dirty side to the shiny coin that most people see about BC, thanks to efforts like Komen.  

FireKracker

Bumping this thread up.

Anonymous

Read your link Athena and very interesting and sobering comments.

You don't have t dig too far to see cancer is BIG business. Some people working within that system do NOT like hearing that, because if they think too hard about it they might not sleep at night.

The more people who wake up to the pure idiocy of "positive thinking" the better. It is nothing but displaying a smug justification and being selfish at the same time.

FireKracker

Komen is so out of control it turns my stomach.

chocolatesalad

Musical, I agree: "cancer is BIG business"

Everything seems to have a pink ribbon on it these days--where there's a pink ribbon, you can be sure there's a price tag. Hubby and I were looking for garden decor last spring--we came across some "pink ribbon" stakes(move over, pink flamingos) for the yard.  I will not "wear a label" and contribute to the brainwashing.

There's "breast cancer awareness"--and then there's exploitation.  

I do believe that positive thinking can be very helpful--but it depends on the context. Nobody can be positive 100% of the time(we are not one- dimensional cartoon characters). I feel we're always balancing our darkness and our light in our existence...  

I agree with LILY55, that expressing one's self truly is very healing. For most of my life i was very repressed/supressed. "a good girl", though locked inside, there was so much anger, bitterness, sadness, that I was too fearful to express because of the consequences of expressing my truth; I had an extremely traumatic childhood. Lots of catalysts/experiences since then helped get me to a place of peace and acceptance in my heart, for all that is, was, and will be.  So why am I airing my thoughts if I'm at peace?  Because one does not exclude the other... when the inner is at one with the outer, there is integration, harmony(of course there are exceptions to every rule--like those who do not have a conscience).  But there will always be darkness in the world, so long as there is light... one defines the other, one is the polarity of the other... they are One. We are One.

We can all be heros and fight the "good" fight-- stand up to lies that oppress, that seek to disempower, that seek to control through fear...

we stand because of the power of Love within us. The fight always begins and ends, within--that's empowering to know.

Although I may have stage 4 cancer and have some physical restrictions, I've never felt more spiritually liberated in my life... and being an artist, speaking my truth through my heart is paramount. I feel we each have an artist within even though some may not realize it.

Blessings to all. This is a wonderful thread.

jessica749

Wasn't sure where to post this but great article in my humble opinion, in tomorrow's New York Times Sunday Magazine section by Peggy Orenstein (herself diagnosed twice with bc) called "Our Feel-Good War on Breast Cancer"...I think it makes alot of great points. Some of those points have to do with the Komen Foundation and it's focus on mammograms and pink ribbons/"survivors" vs Stage 4 patients and putting money into research and a cure.

Link here  http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?ref=magazine

gillyone

I saw this too - it is a great article. A bit long, but worth spending the time.

jessica749

Yeah, I was surprised to learn that apparently a very small amount of Komen's total $$ goes to research! like 10%. The article author thinks that should change, also conflating stats to include DCIS etc which muddies the truth of the 'progress' made in terms of diagnosing deadly bc's and whether or not we are improving survival stats.

gillyone

Jessica - not sure where this article should go either, but I think it is worthy of its own thread rather than a tag-on to this rather old thread.

dltnhm

Jessica, I agree with gillyone - the article needs its own thread.



It's a fairly balanced article. And it doesn't paint with broad brush strokes of condemnation.

EnglishMajor

Hi all,

MBCN summarized the article here: http://mbcnbuzz.wordpress.com/2013/04/27/our-feel-good-war-on-breast-cancer-mbcn-responds/

The original article is pretty long, but it is well worth the read.

jessica749

Yes, you are right. I didn't know how to create a new thread. But I see it's easy. So I'm doing it.