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Endometriosis: What Is Yellow-Washing?

Yesterday, I posted the following Facebook status. I didn’t take posting it lightly. After all, I am well aware that some of my own Facebook friends might not understand what my point is or agree with my perspective. Nevertheless, I decided it was a topic well worth discussion. So, I posted this comment yesterday afternoon:

CAUTION: Beware of yellow-washing. (Think pinkwashing only with yellow in its place).


Yesterday, as the first day of Endometriosis Awareness Month drew to a close… I found myself seeing an analogy between the pinkwashing phenomenon seen with breast cancer awareness and what struck me as a similar phenomenon involving the color yellow and endometriosis.

First, for those who are unfamiliar with the concept of pinkwashing… here is a definition of the term pinkwasher, courtesy of Think Before You Pink:

Pinkwasher: (pink’-wah-sher) noun. A company that purports to care about breast cancer by promoting a pink ribboned product, but manufactures products that are linked to the disease.

Definition source: HERE


So, one may ask, what does all of this have to do with endometriosis? Well, I have certainly seen companies claiming to help the endometriosis cause that have pushed or do push products linked to (possibly causing?!) infertility, reproductive problems, endocrine disruption, etc. This is nothing new. Does this get me really fired up? You bet.

I noticed online yesterday that site after site and organization after organization (festooned in yellow ribbons or selling paraphernalia that purports to “increase endometriosis awareness”) were, in some cases, making money off of enthusiastic patients who are, understandably, aching for increased awareness. (I saw sites raking in big donations and I saw sites pushing “endometriosis awareness” merchandise. I also saw what smacks of data mining on Facebook. How better to market “endometriosis awareness” wares than to create pages that attract patients? But I digress). There wasn’t an overt exchange of funds in all cases. However, the parallels I noticed yesterday between pinkwashing and, for lack of a better term, “yellow-washing” were, to me, undeniable.


I wish to be very, very clear that my intent is not to upset any endometriosis patients or dampen their enthusiasm at wearing yellow shirts and/or ribbons. It wasn’t very long ago that I was fairly decked out in yellow myself (or another color for another awareness month for another of my chronic illnesses). The thing is that over the course of time (nearly three decades of living with chronic illness), I have come to view things differently.

As I witness the effects of pinkwashing and I see what looks like the advent of yellow-washing unfurling for endometriosis, I can’t help but wonder whether the sea of yellow I encountered yesterday (in the course of just one day working online) – some of which was linked to sites that DO receive money – is helping the endometriosis cause or not? Again, I do not wish to upset any fellow patients who are excited and enthusiastic about “getting out the yellow” for Endometriosis Awareness Month. I just can’t help but question whether yellow-washing will be to endometriosis what pinkwashing is to breast cancer.


Will yellow-washing follow in the footsteps of pinkwashing? Are there more effective and/or less harmful ways of promoting endometriosis awareness besides assisting yellow-washing to grow into a pinkwashing mimic?

A friend of mine tells me that her husband, whose mother died of breast cancer, is totally frustrated with the pinkwashing phenomenon.

Dr. Diane Neal, who you may have met in yesterday’s post, has written research papers on endometriosis.

Starting this fall, she will teach health information science.

She wonders “if such merchandising might be funneling much-needed research money away from worthy projects”?

Speaking for myself, I would like to see the cause (or more likely causes) of endometriosis pinpointed so that research can be focused on how to prevent it (if that’s possible), reduce the chances of potential environmental factors from making matters worse (i.e. exposure to endocrine disruptors), and find ways for the average diagnosis of endometriosis not to take 10 years.

Preventing or minimizing endometriosis may not be the massive money-maker that treating (please don’t get me started on the endometriosis treatment options currently available) or trying to “cure” endometriosis after-the-fact.

I have lived with endometriosis for 29 years now. It pains me (no pun intended) to see how little has been accomplished in the last few decades. It disturbs me to witness women going through the same “rat’s maze” in 2011 that I did starting in the 1980s and 1990s. It really troubles me to see endometriosis patients turned into cash cows (something I have written about before: Endometriosis Patients Viewed As Cash Cows?).

I think pinkwashing may well be a harbinger. Personally, I don’t care to have yellow-washing join the ranks of pinkwashing (and greenwashing, for that matter).

For more about pinkwashing, breast cancer, and organizations that seek information on how to PREVENT illness (trigger alert for my infertile friends on some of the links below), see these articles and websites:

New York Times: Think About Pink

New site: Breast Cancer Action

Environmental Working Group


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis: What Is Yellow-Washing?

8 comments

1 StephNo Gravatar { 03.02.11 at 3:08 pm }

You have a valid concern, and I share this concern! Just wanted you to know that I stand with you on this.

2 JennNo Gravatar { 03.02.11 at 5:03 pm }

I stand with you too Jeanne!

I know it can be difficult to speak the truth, especially when you don’t want to upset people and their efforts. But I praise you and thank you for speaking this truth. It is absolutely a topic that needs to be brought to light. You handled the topic with grace and care, as always. : ) I am eternally grateful for your vigilance. I hope we can learn from what has happened with pinkwashing and prevent it from happening to the endo cause. It is a great reminder of the importance of doing our own research before joining or supporting an organization, because seeing the yellow ribbon is not enough.

Thank you for having the courage and strength to speak the truth.

3 Dorian aka coffeesister |_|)No Gravatar { 03.02.11 at 7:43 pm }

What Steph said! ~_~ I would say more but my head’s swimming today.

Here’s to authentic awareness with a focus on those affected..
(|_|*Endo may not be curable but it’s survivable*|_|)

4 JeanneNo Gravatar { 03.03.11 at 12:46 pm }

Steph:

Thank you for your support! I think it’s crucial for endometriosis patients to vote no with their pocketbooks on merchandise that claims to “help the endo cause” when really it seems to be (or clearly is) profit-driven. I just can’t stand the thought of endometriosis getting yellow-washed the way breast cancer has been pinkwashed!

Also, because I frequent sites and Facebook pages for all sorts of chronic illnesses (since I have the illnesses myself), I can’t help but noticing the patterns… of merchandising infiltrating so many sites and pages. It’s big money!

Also concerning to me is sites that accept donations “for endo” without explaining how the donations will benefit the endo cause in any way. Sigh.

Jenn:

Thank you!

It was difficult to write this post because I am all-too-aware that some people might perceive it as me raining on their parade… which is not my intent at all! I really don’t want to upset anyone. At the same time, I believe very strongly that yellow-washing could be to endometriosis what pinkwashing is to breast cancer and that really concerns me. Thank you for your kind words.

I too hope that we, as endometriosis patients, can learn from pinkwashing and strive to prevent yellow-washing from really taking hold in that same sort of commercial, profit-driven, misleading, conflict of interest type of situation. Who wants that? Not me! Having learned a lot about pinkwashing, I can see where yellow-washing could easily grow into big business just based on the sheer number of endometriosis patients.

Yes, I think it’s imperative for people to do their own research before joining or supporting an organization. Absolutely. Truly, seeing the yellow ribbon is not enough!

With pinkwashing, that pink ribbon gets slapped on a great deal of things. Some of them contain chemicals that are linked to breast cancer! So, it really is important for people to do the due diligence to ensure that they are not inadvertently supporting organizations/people who claim to help endometriosis patients while exploiting them instead.

Thank you, Jenn! ;)

Dorian:

Thank you! As you pointed out, “authentic awareness with a focus on those affected” really is the goal! People making money off of endometriosis patients in the name of “awareness” is not the goal.

Yes, Dorian… endometriosis is survivable. I’m glad you finally got properly diagnosed and I hope you are recovering nicely!! You had quite an ordeal!

~~~

Jeanne

5 AnnieNo Gravatar { 03.05.11 at 2:41 am }

Yes, the pink-washing with breast cancer has gotten beyond annoying and I’d hate to see the same thing happen with endo awareness. I can’t recall ever seeing a yellow endo ribbon yet, though, and most people seem completely clueless about endometriosis, so I think we’re still a long way off from yellow-washing. Sadly, I doubt endo will ever get the attention or research like breast cancer does. That’s a much more popular cause because, really, who DOESN’T like breasts?

6 JeanneNo Gravatar { 03.06.11 at 3:51 am }

Annie,

The examples I referred to in the post when I was talking about what I am calling “yellow-washing” occurred online (and not just on a site or two). I am definitely not suggesting that yellow-washing has expanded to brick and mortar stores in the way that pinkwashing has.

Frankly, I would be happy if “yellow-washing” never takes a hold any more than it already has. As you said, I would be sorry to see yellow-washing (for endometriosis) follow in the footsteps of pinkwashing (for breast cancer).

There are most certainly far too many people clueless about endometriosis! There is no doubt about that!

Do I think yellow-washing is the answer to increasing awareness of endometriosis? No. Does the fact that there are so many people clueless about endometriosis mean we’re a “long way off from yellow-washing”? I don’t think so.

There can be organizations, companies, and individuals engaging in yellow-washing (whether it’s readily apparent just online now doesn’t make it any less exploitative of patients… except that it happens, now, in much lower volumes than pinkwashing for breast cancer) without it having spread into the pink saturation that is involved with pinkwashing having deeply infiltrated our culture.

My whole intent with this post was to call attention to the fact that this xyz- washing, in my opinion, (and that of many fellow endometriosis patients I know) is not a model to follow or strive for. In other words, I’d love it if we can band together, nip it in the bud, and vote no with our pocketbooks (to those trying to just make a buck off of endo patients).

Also, for all of the massive publicity associated with pinkwashing, the general public isn’t as well-informed about breast cancer as it should be (lots of misinformation and special interest groups spinning the truth) and the rates of breast cancer have not declined the way one would hope with all of the millions of dollars raised by walks, money donated to nonprofits, etc. (Hmm. Where has all that money gone? Where is all of the education about prevention of breast cancer?)

I’m certainly all for awareness. However, awareness in and of itself is not enough… especially when special interest groups like pharmaceutical companies are spinning the messages about breast cancer and twisting them into pretzels.

Endometriosis may very well not receive the attention or research that breast cancer does (for reasons too numerous and complex to get into here). Endometriosis deserves both! However, I do believe there is potential for endometriosis campaigns to sexualize them in a manner that I do not believe would be helpful. Without naming the various breast cancer campaigns/gimmicks that have sexualized a serious illness, that can be deadly in some cases, I’ll just say that I would be very disappointed if this sort of phenomenon were to catch on for endometriosis.

While endo may not pertain to breasts (except for those endo patients who fall into the category of endo patients that represent the higher risk of breast cancer in endo patients than in non-endo patients), I believe endometriosis awareness campaigns absolutely have the potential to be twisted into messages that focus in on what gets headlines versus the overall host of potential symptoms. (There have already been controversial endo articles over the years such as the study – since vehemently refuted – that intercourse or tampon use have effects on endo that they simply don’t have).

Recently, there was an MTV show that had been promoted within the chronic illness community as a show about interstitial cystitis (which I also have and which has a variety of symptoms). While I didn’t watch that show, I heard and read enough about it to know that many IC patients were heartbroken with disappointment at the show’s focus (aka obsession) on symptoms involving painful intercourse. (Yes, I know I’m talking about MTV and, yes, I know they wanted to get high ratings).

The thing is that they never even mentioned IC on the show once and they did feature some very graphic footage that embarrassed IC patients who were excited about the show and had sat down with loved ones (including parents, in-laws) to watch the show in hopes that it would educate their loved ones a little in how IC affects them. These patients were embarrassed (using phrases like “I’m just mortified to have watched this with my in-laws”) with the crass way the show ended up being portrayed. Anyway, the bottom line is that the show (from what I heard from many sources) really missed the mark from what people were expecting.

So, while endometriosis may not be sexualized the way breast cancer has, I think anytime you’re dealing with an illness that affects all women (endo) or primarily women (IC, breast cancer) and affects the reproductive system (like endo) or that can cause symptoms such as painful intercourse (endo or IC), there is the potential for those “headline or ratings grabbing” symptoms to have disproportionate attention focused on them.

BTW, IC is another illnesses for which I’ve seen scammers prey on patients via Facebook pages hawking “IC awareness” paraphernalia.

Jeanne

7 EndochickNo Gravatar { 03.08.11 at 11:03 am }

Everyone – I found a site that demonstrates what Jeanne is talking about – the whole “yellow washing” thing.

Yes, we are all fighting for awareness. No one can argue against that. After all, logging on and constructing thoughtful and educational blog posts (especially this month for awareness) takes valuable time from our days. We wouldn’t do this if we were not fighting for something.

Just take a look at this link with an open mind. When a charity is selling items for a cause -regardless of the cause or color – you have to ask, “where is the money going?” Some of my employers formed a group for Breast Cancer. We have a LARGE breast cancer center providing care to women with cancer, and a large research population. I asked them, “where is this money going?” It turned out that all the proceeds went right back to the patients seen on-site. They helped buy wigs, bandanas, gas for driving, cab fees, wheelchairs, hospice care. Even some of their care was written off for the disadvantaged. Their motto, “we aren’t going to let you die because you cannot pay.” When I saw this in writing, and could see a break down of where the funds went (not in a single employee or drug company pocket), I decided to support the group. It was formed by employees directly affected by cancer who had been treated at the center or who had family members treated there. You must be aware of how a charity uses funding. How much of it goes directly to patients vs. how much is eaten in administrative fees. Most of the time, the numbers will shock you.

The link: Fight Like A Girl Club

8 JeanneNo Gravatar { 03.09.11 at 12:26 am }

Endochick,

I totally agree with you that it’s imperative to identify where money is going on anything involving charities. I’m glad that you were able to get specific feedback to your questions about the charity in question that satisfied you and made you feel comfortable that you knew where your donation was being spent. It’s fantastic that you were able to obtain a written break-down on where the funds go to. That is awesome (and unusual) that there was no pharmaceutical company factor with which to be concerned. Yes, being aware of how a charity uses funds is key. The breakdown of how much directly benefits patients vs. how much goes towards admin costs is truly shocking at some nonprofits.

In regard to the Fight Like A Girl Club site that you mentioned, I don’t even know where to begin. I myself first randomly stumbled into the endometriosis section of the site (last night). Then, I took a look at the homepage and realized that the site has a very long list of illnesses! Next, I browsed the online store. Oh my! First, since the illness list was in alphabetical order from A through U (as in AIDS through uterine cancer… how I wish I were making this up!!!), I clicked on an AIDS T-shirt. It was $21.55 for an AIDS T-shirt.

Please excuse my sarcasm… If I were sick with AIDS, a $21.55 AIDS T-shirt from the Fight Like A Girl site would be at the top of my shopping list… NOT!

I was appalled at the aggressive marketing tactics for illnesses that can be fatal and I fully recognize that the warm welcome the site gives re: adding other illnesses to their list (even if they are not life-threatening… such as endometriosis) is, I’m surmising, easily attributed to the fact that the site greatly expands its profit base by including all sorts of illnesses. Heck, why limit themselves to just fatal illnesses? Don’t get me started!

I won’t even get started on the cartoon characters on the site (one of which reminded me of a Bratz doll). The post there that makes a direct analogy between breast cancer awareness (as a model to strive for when seeking to generate endo awareness!) and endometriosis awareness was just the sort of thing I was concerned about when I wrote the yellow-washing post. Once I got to the “Save the T_ _ _ _” reference, I had steam coming out of my ears.

Not only is it exploitative to target chronically ill and even terminally ill patients with such an (expensive) online store (I’m unclear re: where the profits go) but I found the general presentation of the site downright demeaning. The “club” with cartoons struck me like a site aimed at teen girls.

Don’t get me started on the “Save the T….” campaign.

I know. Why don’t I tell you what I really think, huh? ;)

I really think that the site is a potentially huge money-maker, that it is the wrong way to generate awareness of illnesses, and my personal perspective is that it actually exploits patients while portraying itself as being on the side of patients.

That’s just what I observed before I bailed off the site in disgust.

Jeanne

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