pinkbrushphoto_13690_20100311My intention was to try to avoid Pinktober this year, especially after losing my friend Cathy last month. I’ve avoided going shopping to avoid being aggravated by all the pink branding. But sometimes it’s just unavoidable. Suddenly you see a big pink truck while waiting for a bus, or a pile of pink ribbons at the breast cancer center check-in area with a huge sign that reads, “It’s Breast Cancer Awareness Month!”— Except, EVERY SINGLE PERSON who enters this building is already a breast cancer patient. They are aware every day. And, at this point, so is everyone else.

I am sitting here wondering how much longer it will take for the pink culture to evolve. How about we start by creating legislation that pushes commercial companies to donate a certain minimum percentage of their Pinktober profits to serious cancer research — especially for advanced stage disease where the need is most desperate.

I’ve also been noticing the divisions in the cancer community that come out during Pinktober. Some of us rage against the annual pink hype, while others embrace it. Do these differences in perspective have to do with the way each patient chooses to handle their cancer, or does it have to do with the facts each patient is/wants to be exposed to? Or, like everything else, is it just that different types of people (even with shared experiences) simply develop different ways of viewing the world?

In the last couple of weeks, I’ve seen the online discussions where patients argued about their position on Pinktober. One person questioned why some of us express outrage about other survivors wanting to celebrate each October. That misses our point. Some patients even call their fellow patients who disagree with pink culture “12-year-olds” and “bitter” because, according to them, we refused to see the “positives” in all the hype. But our negative reaction has nothing to do with bitterness or immaturity. The problem isn’t whether patients should celebrate being alive (of course they should) or wear pink. The problem is that in all of this pink business, the reality of breast cancer is not being shown, and a lot of people in the public aren’t learning much, despite all this “awareness.” Stories are only half told. And the patients whose stories most need to be heard are being ignored.

Let me tell you about what happened to me last October, and maybe you’ll understand why I don’t want to tolerate the pink-washing of cancer anymore.

One day, representatives working for a major TV show reached out to me because they found a post I had shared about my friend Cathy, who was dealing with stage 4. The show was casting for a “compelling” story to present during breast cancer awareness month. They thought my friend’s story was very touching so they wanted to showcase her. I was happy to hear that they were considering having a stage 4 patient on their show.

I was asked a lot of questions about my connection to Cathy, and about her ability to travel and present herself at the show. They asked if I was willing to be part of the show too. I said that depended on what was expected of me. But, they felt Cathy and I were perfect for the show, because we were both cancer patients and also friends.

The first thing I suggested was that maybe we could focus on research for stage 4, since Cathy was going through it and I was also at a risk. The topic would have been ideal for “breast cancer awareness” month, I thought.

Well, that is not exactly what the show has in mind,” I was told. “We were thinking about how your friend Cathy helped you during your treatments, and how now you have the opportunity to help her by bringing her to the show to get a spa day. Your job is to bring her here and the two of you will be pampered. She can’t know about it, though. It would be a surprise.

In other words, we would be part of a script that had already been written.

I told them I felt uncomfortable presenting myself that way. I didn’t think that Cathy would feel comfortable with it either. I offered to help get Cathy to the show, but only if she agreed in advance, and I said that I did not want to be part of their script. The only way I would agree to be in the show was to talk about research.

That’s when I was told that I had to agree with their plan — and that there were other patients that they were reaching out to. They couldn’t promise me anything.

All of the sudden, our story wasn’t so perfect for the show anymore.

Maybe I should have played dumb and went with the flow, and then showed up at the TV show in my “pink is not a cure” t-shirt. But they probably would have had me sign a contract. A contract that did not represent what I believed in. A contract, that to me, represented that it was OK my friend was dying from MBC. I didn’t want to be part of the problem.

Cathy and I did not take part in the show. Days later, a bunch of survivors appeared at one of their shows during October.

Come on down and show us your Pink Spirit. We have festivities planned throughout the morning on our big ‘Day Of Giving’.”

Knowing what I know now about how private and protective Cathy was about some parts of her diagnosis, I know how mortified she would have been to be brought to a TV studio with millions of people watching, live, and having herself exposed to the kind of attention she did not want and that truly would NOT help her.

I never told Cathy about this experience because I did not want her to feel the way I felt. She told me she hated the pink culture, even if maybe she did not confess that to others who were close to her. She knew I’d understand. There was no way I was going to allow her story to be told in a superficial way.

Of course, I get it: the producers of that show did not want cancer to be TOO upsetting to the TV audience. Viewers would have changed the channel. The show just wanted to be the recipient of the good feelings created by an uplifting story, even if they were hiding the reality. But that is offensive and unproductive for a lot of us patients who can’t ignore the reality. It’s our life.

So, for those who ask, that’s an example of where my anger is coming from. If I was already skeptical about pink culture, interactions like that turned me off to pink business for good.

For me it comes down to one thing: I WANT A CURE.

And let me clarify, I am not against patients receiving any form of support they can find. That is not what we, the “angry ones,” have a problem with. It’s that, once again, many of us in cancerland are invisible, because only one side of the cancer story — the uplifting, made-for-TV side — is being presented in Pinktober. If the cancer-kick-ass-pink-ladies stories are all people see and know about, then there will always be the lack of progress and education (and a delay in finding a cure!). If people don’t know the whole truth, what is going to make them want to contribute real attention and money and political pressure for serious research?

As long as organizations find vulnerable cancer patients they can exploit for good publicity, these types of distractions will never end. And we’ll continue to have over 40,000 people dying from MBC every year (in the U.S. alone) — some will include the cancer-kick-ass-pink-ladies.

I don’t want other patients and survivors to refuse the support and attention they may need to keep them going. But in all this pink business, maybe we can start by asking ourselves one question:

How will this contribute to saving my life if I ever become stage 4?

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
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12 Responses to Pink-Washing

  1. illlive says:

    Thanks for posting your thoughts. Since I’m not in the breast cancer community, and my cancer doesn’t have the “brand recognition” that BC does it is helpful for me to read this. Melanoma’s “official” color is black, which means I show my “team spirit” almost every single day! 🙂 Even though I’m not in the BC community, I still managed to get “Pinktobered” at the gym the other day, when I mentioned to someone there that I had cancer and he picked up a pink wristband and waved it at me!

    What a horrendous experience with the TV people. And what a good friend you were, to protect Cathy from that unwelcome intrusion.

    The month is more than half over!

    • thesmallc says:

      That’s another issue to address, how other cancers don’t get the same level of attention BC gets. I wish that with all the attention our cancer gets, we were at a much better place in terms of education and treatment options for stage 4. And yes, that experience was upsetting and I still think about it. I had to let it out! Thank you for your support. I hope you’re doing well. xx

  2. scottx5 says:

    Good posting and good point about essentially editing out the trauma (my fav word now for the exposed to the reality of death group who just think differently after). Pinktober is about commercializing cancer with hard parts left out because if we go too far down the emotion well we disconnect from worldly things and empty values.
    Appropriating people’s stories could possibly serve as educational but we no longer seem to tolerate unhappy endings or genuine sadness. Those of us who speak of the whole experience, as you suggest Rebecca, spoil the fun with reality and wreck to party. But why?
    Anyway, maybe the thing is to reacquaint ourselves with the completeness of our whole life experience and stop living for the sake of amusing our silly selves.
    How about changing the story? Just heard of this site this morning in a discussion about empathy and it looks interesting for changing narratives:
    Change the Story: Harnessing the power of narrative for social change
    And this comment:
    the power of not glossing-over what is broken and painful

    • thesmallc says:

      Hi, Scott! Thank you for the helpful links. I quickly went through the comments and found Justin’s response to be quite powerful. It explains why us patients connect in such an intimate way and so instantly. Remember Barbara’s article, (About to get her book — check out Nancy’s latest post.) Don’t recall if this article came from you. This “positive thinking” is part of our culture. Some people are uncomfortable with reality; even those who share similar experiences. Some of it has to do with the lack of empathy but not all. Maybe it’s a human flaw. I’ll def. look into this site. I always appreciate your insights and support. I hope you (and your wife) are doing well.

  3. Terrible story. words…my frustration runs over…

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  5. I can see where there are multiple perspectives to the whole pink thing, but to me, there’s no rah-rah justification for duping people into giving money, thinking they’re giving to research, when a huge portion of it doesn’t do a damned thing for cancer patients or research. Oh, I could go on, but I know we’re on the same page.

  6. Pingback: Pink (NOT Pinkwashing) for health | I'll Live

  7. bethgainer says:

    Rebecca, I’m so very proud of you for doing the right thing by avoiding that awful show. It’s a terrible thing to convey information about breast cancer if you have to go through a script. What you describe is a huge part of the problem. It’s why research funding is low — because so many people see what is portrayed on TV and think that this is what breast cancer is all about.

  8. Pingback: And This is My Truth – A Summer Blogging Challenge | The small c

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