Beyond Breast Cancer: What Would the World Look Like if it Were Purple Instead of Pink?

Leslie Rott Health Guide
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    The author and her sister at the 2010 lupus walk in Beverly Hills, Michigan and the 2011 lupus walk in Royal Oak, Michigan.

     

    There’s a new color line, and it has nothing to do with race.

     

    It’s October.  You walk into the grocery store and are hit with a pink-clad vision.  No, you’re not wearing rose-colored glasses.  It’s Breast Cancer Awareness Month.  And boy, are companies making everyone aware of it.  Everywhere you look are packages with pink tops, pink labels, pink everything.  Everything from Lay’s potato chips, to Yoplait yogurt, to wine and other types of alcohol; Coach, Vera Bradley, Sephora…The list goes on and on.  Even the National Football League (NFL), where it is antithetical to watch football players prancing around on the field sporting pink shoes, arm bands, gloves, towels, and the like. 

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    Breast cancer awareness has been so profitable because it becomes a cause not just for those with the illness.  It seems that these days, everyone knows someone who has had breast cancer.

     

    In some ways, this is an amazing feat.  One single cause, bringing so many companies, and so many people, together.  But on the other hand, it is somewhat nauseating, especially for women who suffer from other “women’s diseases,” such as lupus and fibromyalgia; illnesses for which there is considerably less widespread support.

     

    I am one of them.  I was diagnosed with lupus and rheumatoid arthritis in 2008, at the age of 23.  Before I was diagnosed, I had never heard of lupus, and thought arthritis was a disease only old people had to worry about. 


    When I left my rheumatologist’s office the day I received my diagnosis, I wasn’t provided with any pleasantries or any connections to others in the outside world going through what I was.  I didn’t automatically join a sisterhood.  In fact, I felt more cutoff from the “real” world than I ever had in my entire life.  I wasn’t handed a goody bag or welcomed to the club.  And that is one of the amazing things about the breast cancer movement; it has created a sisterhood, a support system, a network for like others.  Lupus doesn’t really have that.  I participated in a support group specifically for lupus patients that was a train wreck, and I ultimately, not all that surprised, watched its demise.

     

    As the Lupus Foundation of America (LFA) suggests, “While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.”  So why does breast cancer get so much more attention than say, well, lupus?  I think there are many reasons. 


    One reason is that the disease is difficult diagnose, and the disease presents itself in different ways for each patient.  On average, it takes over four years to get a correct lupus diagnosis.[1]  Lupus rarely comes with tumors with flashing, red lights.  The signs and symptoms aren’t obvious.

     

    A second reason is that, according to the LFA, “Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.”  For anyone who knows anything about disparities in health care, this is a sad fact, but it is not surprising at all.  Lupus is a disease that effects primarily minority women (the author of the present article not included).

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    So what if Yoplait made their yogurt caps purple, and proceeds from sales went to the Lupus Foundation of America?

        

    I’m certainly not the only one to express discomfort over the “pinkwashing” that seems to get more intense every year.  Maren Klawiter (2008), in her groundbreaking book, The Biopolitics of Breast Cancer, describes the situation as follows: “BCA [Breast Cancer Action] helped coin the term ‘pinkwashing’ to characterize these corporate promotional campaigns” (250), pointing to the widespread “corporatization” of breast cancer.[2]


    Further she explains that  “BCA [Breast Cancer Action] charged were ‘cleaning up’ by exploiting the good will of consumers and using the issue of breast cancer to sell products, often without contributing much, if anything, of value to the breast cancer movement” (Klawiter 2008: 250).

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    Sociologist Barbara Ehrenreich pleads in “Welcome to Cancerland,” “Let me die of anything but suffocation by the pink sticky sentiment embodied in that teddy bear” (2001: 44).[3]  Further she says, “The effect of this relentless brightsiding is to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against, but a normal marker of the life cycle […]” (49).  The reality is, breast cancer should not be a rite of passage.  And lupus should not be swept under the rug.  Many disagree with Ehrenreich, as she suggests, “In the breast-cancer culture, cheerfulness is more or less mandatory, dissent a kind of treason” (50).  But I agree with her.  Maybe all the pink serves its purpose, but does it desensitize us to what’s really going on?  Women are dying.  And let me remind you, not just from breast cancer.   

          

    There’s even a website created by Breast Cancer Action, specifically addressing the issue of “pinkification” called Think Before You Pink.[4]  They strongly caution against jumping on the pink bandwagon.  According to the website, “Think Before You Pink™, a project of Breast Cancer Action, launched in 2002 in response to the growing concern about the number of pink ribbon products on the market. The campaign calls for more transparency and accountability by companies that take part in breast cancer fundraising, and encourages consumers to ask critical questions about pink ribbon promotions ” (emphasis in original). 

      

    As someone who has attended the lupus walk in my area for several years, they certainly do not hold a candle to the spectacle that is the Race for the Cure©.  Race for the Cure© is the embodiment of “pinkification” (my term) or “pinkwashing”, if you prefer.  You can barely walk because there are so many people in attendance.  At the lupus walks, you can barely walk because the route isn’t 100% obvious.  The march of the survivors is much more poignant and powerful than carrying a cardboard butterfly on a three foot long stick, while trying to walk three miles.   


  • It becomes a game of us against them.  If your company is not turning pink, you do not support breast cancer?  The truth of the matter is, no one should support breast cancer.  You should support finding a cure.  But that seems to be as much of a pipe dream as turning everything purple to support finding a cure for lupus.  In reality, this isn’t about the color of our causes, but the passion that is in our hearts.      

     

    Nancy Brinker (2010), in her book, Promise Me, wrote, “Three cheers for chartreuse!  Godspeed, indigo! […] I’m not willing to divert attention to popularity contests, celebritized egos, or the so-called breast cancer wars between varying schools of thought” (132).[5]

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    I’m inclined to agree with Brinker that a popularity contest is not the answer, and I’m not suggesting that women who have lupus team up against breast cancer survivors.  No, that’s not what I’m suggesting at all.  In fact, what I think would be best is if we could stand together, legions of pink-ified women with legions of purple-fied women, trying to find cures for our respective diseases, with the shared goal of making sure that no one who comes after us has to suffer or die from these diseases.

     

    We need to pool our resources.  We need to recognize that there exists causes other than our own.  But we can’t reach out to an audience that isn’t there.  So much more is understood about breast cancer now than several years ago.  That doesn’t mean that awareness should stop.  It just means that attention should now be focused on something that hasn’t received enough attention.  Breast cancer should pay it forward. 


    I know there has been some discomfort on the breast cancer side to focus on women’s diseases.  And lupus suffers from the same problem.  Men get lupus, too.  Certainly not to the degree that women do, but relegating them to merely a footnote wouldn’t be smart either.

       

    The Susan G. Komen Breast Cancer Foundation has been masterful at what Brinker (and Breast Cancer Action) call “cause marketing”.  The foundation has capitalized on the emotional side of illness, on the fact that it can happen to any woman at any time. 


    But lupus can happen to any woman, at any time, although mainly between the ages of 15 and 45 years old.  So why has this not struck a cord with do-gooders?  Maybe because doctors, patients, and families who are touched by the disease are so mystified by it, how can people who have no connection to it begin to understand the wrath that the disease causes? 

     

    There hasn’t been the celebrity stronghold that there has been for breast cancer.  But it’s unfortunate that we still live in a world where we have to be star struck in order to glom on to a cause.  As Ehrenreich suggests, “Today however, it’s [breast cancer] the biggest disease on the cultural map, bigger than AIDS, cystic fibrosis, or spinal injury, bigger even than those more prolific killers of women – heart disease, lung cancer, and stroke” (45).  Bigger (obviously) than lupus.  “Now breast cancer has blossomed from wallflower to the most popular girl at the corporate charity prom” (45).  It would be great if breast cancer could share the wealth.  Women, young women, are dying from lupus.  Shouldn’t that count for something?  And shouldn’t women who could share the same fate from a different disease be the best positioned to understand and be sympathetic to the cause?[6]     


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    I can sit here listing all of the reasons why lupus is not the “it” cause of the moment.  But what good does that really do?  I guess what I want the reader to take away is that there is a disease called lupus.  It is chronic.  There is NO cure.  It affects mainly women, in their childbearing ages.  If you didn’t know someone with lupus before, you do now.  So if you don’t have a cause of your own, consider lupus.  Because of how much reading I have done about illness, I know that many of the experiences had are similar, so I try not only be loyal to my own cause.  That said, I’m going to fight for my cause if it kills me.    


                So for all of the women in your life, and the men too, do something good today.  It doesn’t have to be for my particular cause.  But I hope you will consider the fact that we live in the most industrialized country in the world, and yet, women in the prime of their lives are being taken down by devastating diseases that they never saw coming.  There were no warning bells, and there certainly wasn’t anything equivalent to a self-breast exam that women can do to diagnose themselves with lupus.  Many of us don’t even know what lupus is until we have it.  There’s just a weird constellation of symptoms and then the world comes crashing down around you.   

    We parade around, proving we’re strong enough, brave enough, to endure things that many other people won’t experience.  But I don’t care about being strong or brave.  I want a cure.  And ultimately, despite the bravado, I think that’s all women with breast cancer want, too.  It’s not collections of every piece of memorabilia with a pink ribbon.  It’s a life beyond illness.  Beyond breast cancer.  A life where not only are we healthy, but our daughters will be healthy.  We won’t have to live in fear that our future offspring might share our fate, or that things that have been done to our bodies as a result of our illnesses will severely impact them in some way.  And for some women, the wish is simpler.  To live, simply to watch their children grow up and reach adulthood.     


    So, this month, as we celebrate the strides made and lament the lives lost, I ask that you remember to do one simple thing.  Please, think before you pink!  Even think before you purple.  And remember, beyond the bravado and pomp and circumstance, there are real people, real lives at stake here.  So rather than being white bread Americans supporting conspicuous consumption, how about we take real steps to finding a cure?  Who’s with me?

     



    [2] Klawiter, Maren. 2008. The Biopolitics of Breast Cancer. Minneapolis: University of Minnesota Press.  

    [3] Ehrenreich, Barbara. 2001.  “Welcome to Cancerland.” Harper’s Magazine, pp. 43-53.

    [5] Brinker, Nancy G. 2010.  Promise Me.  New York: Crown Archetype.

    [6] I may not have had chemotherapy, but I’ve been joined in the infusion room by people with cancer.  The infusion room is a great equalizer.  I have had steroid infusions, dealt with steroid bloat, had several colonoscopies, nearly lost my arm to cellulitis.  Certainly, my life hasn’t been all butterflies and rainbows the past few years, but I’ve gotten through it, without such a strong network of support as exists for those with breast cancer.  And there are other similarities.  Many of us wouldn’t change things if we could.  Of course, we don’t want to be sick, but then again, we can’t imagine life without it. 

Published On: October 05, 2011