Sexualizing cancer risk

Have you seen the The Cancer Sutra website? It promotes having people check their partners for cancer during sex.

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“Because fear of cancer can be as bad as cancer itself.
Because the earlier you detect cancer, the greater the chances
of treating it successfully.
Because fear, like cancer, may have the power to spread”

The idea that “the fear of cancer can be as bad as cancer itself” isn’t new to high risk women. Studies have shown that testing positive for a deleterious BRCA mutation has the same psychological impact on a woman as being diagnosed with cancer. But Cancer Sutra isn’t for high risk women, or even for women in general. It’s for everyone, regardless of gender or risk.

I can’t help but think of Maren Klawiter’s work on the biopolitics of breast cancer. Klawiter talks about how medicalization has sucked us all into the breast cancer continuum. Regardless of our family histories, our genes, etc., every woman resides on the continuum. We are all risky subjects. We’re taught to fear cancer and fear our potentially-cancerous bodies from an early age: to monitor ourselves and submit to screening in order to be good little patients. There’s a lot of money to made off risky subjects.

Of course, cancer and sex do overlap. Women who’ve had breast cancer and women who’ve had mastectomies must confront the knotty relations between cancer and sex all too often. That’s inevitable when dealing with surgery to an erogenous zone as highly fetishized as the breast. But this campaign is different: the Cancer Sutra wants people without high risk, without a diagnosis, without post-surgical or post-treatment bodies, to sexualize cancer. And it’s all wrapped up in a glossy package with pro-sex, queer friendly prints for sale.

The Cancer Sutra shows just have far the discourse of cancer risk has seeped into the most intimate corners of people’s lives. Now it’s not just women being targeted. As we’re constantly being reminded on breast cancer social media, men get breast cancer too–and prostate cancer and testicular cancer, etc. (you gotta love the insistent “WHAT ABOUT US MEN!” talk that irrupts in every women-dominated space). We’re beyond the breast cancer continuum here. Now all human beings can live in a constant state of cat-like cancer awareness.

Sure, a lot of people get cancer, and telling people to look out for it might seem like a no brainer. However, once again individual solutions are being posed to the systemic problem of the cancer epidemic. It’s awfully convenient, given the ruthlessly expanding cancer continuum and the ever hungry cancer industry, that we’re told to take individual responsibility for a phenomenon so very far outside of our personal control.

Eat right, exercise, think happy thoughts, and you won’t get cancer. Screen constantly, report for checkups like a good little soldier, and you won’t get cancer. If you do somehow get cancer, then it will be caught early and you’ll be a survivor. If you don’t, your cancer will be caught late, your prognosis will be bad, and it will be your own fault. Popular discourses on cancer focus on individual responsibility and individual blame. It’s much easier than fixing widespread environmental pollution, contaminants in our food and personal care products, genetic mutations, and just plain old bad luck. It’s also a lot cheaper.

The Cancer Sutra promotes the idea that groping around your partner’s body to feel for tumors is fun and sexy. Nevermind that it doesn’t actually tell people what they should be looking for during all this hot sweaty orgasmic DIY cancer screening. Nevermind that it suggests early detection is effective for all cancers (it categorically is not). Or that it suggests all cancers act alike (they categorically do not). Or that it suggests all cancers progress neatly from stage 1 to stage 2 to stage 3 to stage 4 (the don’t). And that it suggests individuals can interrupt that tidy progression to save their own lives (sometimes, often not).

If all that wasn’t troubling enough, the Cancer Sutra promotes the idea that we–each and every one of us–should be thinking about cancer rather than pleasure during sex, or rather that we should be finding pleasure in thinking about cancer during sex. How perverse is that?

The Risky Subject in the Risky Body: On BRCA Mutations and DCIS

Peggy Orenstein’s new article “When Cancer Is Not Cancer” tackles the dicey subject of Ductal Carcinoma In Situ (DCIS).

Orenstein visits UC-San Francisco oncology professor, Dr. Laura Esserman. She describes Esserman’s office as decorated with quotes that amount to “When you challenge people’s deeply held beliefs, well, haters gonna hate.” Considering I recently told Cancer Curmudgeon and Get Up Swinging that we should make t-shirts that say Cancer Haters Gonna HATE, you won’t be surprised to hear that Esserman is a scientist after mine own heart.

At issue here is overdiagnosis, a problem in American medicine in general and in breast cancer oncology in particular. Most people tend to think of cancer as something you either have or you don’t have, when in fact cancer is more like a spectrum. Multiple stages stand between a healthy breast and deadly invasive metastatic cancer, including hyperplasia, hyperplasia with atypia, and DCIS.

DCISrange

Orenstein’s article is worth quoting at length.

“Esserman has focused on ductal carcinoma in situ (DCIS), an overgrowth of cells in the milk ducts. DCIS was rare before universal screening. It now accounts for 30 percent of breast cancers — nearly 65,000 cases a year. With its near 100 percent cure rate, DCIS would seem like a triumph of early detection. Except for this: In 50 to 90 percent of cases (estimates vary widely), it will stay where it is — “in situ” means “in place.” It lacks the capacity to spread, so by definition, it will never become life threatening. Yet because there has been no way to predict which cases might morph into invasive cancer, all are treated as potentially lethal. By 2020, 1 million women will likely be living with a DCIS diagnosis. If, conservatively, half are harmless, that means hundreds of thousands of women will have been overtreated, enduring the physical risks and psychological devastation of any cancer patient.”

Certainly, average women are being overdiagnosed with breast cancer and this is not likely to change any time soon. Quite frankly, the cancer industry makes a lot of money by putting women through needless surgery and treatment. Not coincidentally, women have been trained to remain hyper-vigilant about early detection, despite the fact that early detection doesn’t work. As Orenstein and Esserman discuss, if early detection actually saved lives, then the increasing diagnosis of DCIS (AKA “stage 0 breast cancer”) would dramatically improve survival rates. That hasn’t happened.

Together early detection (the pinkwashed cult of mammography, self breast exams, etc.) and overdiagnosis have dramatically extended the “breast cancer continuum” that Maren Klawiter discusses in The Biopolitics of Breast Cancer:

“The movement of the mammographic gaze into asymptomatic populations transformed a relatively clear either-or distinction into a more fluid, fuzzily bounded, and ambiguous breast cancer continuum. Instead of the temporary, either-or sick role of the earlier regime, the regime of biomedicalization created the ‘risk role’ for its new subjects–a role that required that the regime’s risky subjects take up permanent residence along the breast cancer continuum” (86).

I named my blog the risky body long before I read Klawiter’s book, because I wanted to highlight the way that genetic testing turns subjects into objects–in other words, how deleterious BRCA+ results turn women into mere bodies defined by incalculable risk. Thus the headless woman in my blog header. So you can imagine how excited I was when I read Klawiter’s chapter about “risky subjects.” She describes how the medical industry has radically expanded the breast cancer community to include asymptomatic women through proliferating screening methods and pinkwashed discourses, thereby “reconstitut[ing] adult women as risky subjects” (85). My excitement about Klawiter’s work can most accurately be rendered thusly:  !!!! OMG YES ^THIS !!!!

It’s clear that overdiagnosis is a massive problem fueled by capitalist interests invested in a cancer industry that turns nearly all adult women into risky subjects in need of constant cancer screening and/or treatment, regardless of whether or not such actions actually improve women’s health and wellbeing. We need more critiques like Klawiter’s, Samantha King’s, and Gayle Sulik’s to help average women understand–and hopefully resist–the medical ideologies they are being subjected to.

But what does all overdiagnosis mean for BRCA+ and other HBOC women?

Obviously, the discovery of BRCA1 radically expanded the breast cancer continuum in the early 1990s, and, in some ways, HBOC women became the ultimate risky subjects. If DCIS is an un-cancer, then so are BRCA mutations. By this I mean that neither DCIS nor BRCA mutations are cancer until suddenly some day for some women (who we can’t single out in advance) they do in fact become cancer.

How many women are subjected to antiquated, ineffectual, expensive, time-consuming, and stressful screening methods to find those women who will actually develop breast cancer? Sure, we know BRCA+ women are far more likely than an average woman to develop cancer. However, screening alone isn’t prevention. It does save some lives, but not nearly as many as you’d hope it would. Is it any wonder so many BRCA+ women drop surveillance entirely after a few years?

It’s a frustrating situation if you’re like me: a BRCA+ feminist who wants to resist pinkwashed capitalist medical ideologies (if that’s you, then CALL ME MAYBE (or maybe just tweet me @theriskybody maybe because calling would be rather creepy)). I don’t want to be a dupe of pinkwashers and the cancer industry. I want solid scientifically proven methods for preventing, detecting, and treating breast and ovarian cancer. There ought to be a better way of handling things, but right now there isn’t.

While I know screening methods for breast and ovarian cancer are woefully ineffective for both average and HBOC women, I still feel viscerally compelled to be a “responsible patient” by submitting to rigorous screening several times a year. I struggle against being a risky subject in a risky body, however subjectively and genetically inevitable that may be. Honestly, BRCA+ ideological and practical clusterfucks like this made prophylactic mastectomy a no brainer for me.

[P.S. An incomplete draft of this post was accidentally published last week, and when I took it down I lost the great comment someone had posted–sorry about that!]

You are not required to be pretty

pretty

[This meme shows up on my Facebook newsfeed periodically. It’s easy to see why. Although it is attributed to Diana Vreeland, the quote originates from Erin McKean’s blog A Dress a Day. You can read her wonderful post here.]

Jessica Queller’s Pretty is What Changes (2008) takes its title from Stephen Sondheim’s song “Sunday in the Park with George.” Queller uses the relevant verse as an epigraph to her memoir: “Pretty isn’t beautiful, Mother/ Pretty is what changes/ What the eye arranges/ Is what is beautiful.” A lovely sentiment–that beauty is in the eye of the beholder, as Queller explains in this NPR segment–especially given the way Queller details her fashion designer mother’s troubling obsession with beauty.

Given this critique of beauty standards and Queller’s attempts to position herself as the nerdy ugly duckling in a family populated by glamorous women, it’s surprising that Queller talks about putting on makeup before her prophylactic bilateral mastectomy and placement of expanders for reconstruction: “I had put on a little blush and lipstick that morning while dressing for the hospital. I was, after all, my mother’s daughter” (201). Before Queller’s surgery, her sister Danielle tells her that a young male doctor is being flirtatious and Queller exclaims “Thank goodness I put on blush this morning!” (201). When she wakes up after the procedure, Danielle says “You’re the only person who could come out of five hours of surgery with her blush and lipstick looking fresh and rosy!” (202).

Before her exchange surgery, Queller says that she feels tired, so “I certainly hadn’t bothered with makeup” (208). However, as she’s waiting in pre-op before the surgery, the same attractive doctor appears to say hello and mentions that he’ll check in on her during recovery.

“Dr. Kutchin left, and Dani and I turned into giggling, frazzled eighth graders.

‘Did you bring my makeup? I need some blush!’ I cried.

‘Yes–it’s in the bag. He likes you!’

‘I look like hell–he said he was going to visit in recovery!”

‘Don’t worry.’ Dani took out a makeup brush and dusted my cheeks until they were rosy. ‘All better.’ (208).

So much for following through on the promises of the book’s title and epigraph. It’s disheartening that these scenes come towards the end of the memoir, when Queller has already detailed the many problems with her mother’s obsession with beauty. In the end, her book shows that BRCA+ women can stay pretty despite the physical and psychological stresses of grueling risk-reducing surgeries. Maintaining dominant white beauty standards is as easy as blush and lipstick.

This obsession with maintaining prettiness during mastectomy isn’t limited to the BRCA+ community, of course. It also pops up in Marisa Acocella Marchetto’s comic Cancer Vixen (2006), a book with so many ideological problems that I’m going to restrain myself and just mention her constant evocation of MAC cosmetics.

And of course, there’s Geralyn Lucas’s Why I Wore Lipstick to My Mastectomy. I heard Lucas speak at the Joining FORCEs conference last summer and she made it seem as though wearing red lipstick into her surgery was a performance of the kind of person she wanted to be throughout her experiences with breast cancer: bold, confident, strong, feminine. The book actually treats lipstick in a far more complicated manner than this and I don’t have time to deal with it fully here. Suffice it to say that somestimes she depicts applying lipstick as a confident act and sometimes it seems more like an act of desperation. Still, Lucas not only wore lipstick into surgery, but also named her memoir after this gesture.

Encountering the makeup trope repeatedly in supposedly empowering breast cancer and BRCA+ memoirs, all I can think is “For fuck’s sake, am I the only one who read The Beauty Myth?”

When I told someone I was going to write a blog post on wearing makeup into surgery, he said “Why bother? It’s obviously stupid. It’s not worth your time.” In some ways, he’s right: wearing makeup into surgery is clearly a bad idea–just ask your surgeon. But I think the problem of pretty goes far beyond Queller, Marchetto, and Lucas. It’s symptomatic of larger trends in breast cancer and BRCA+ discourses, which are still dominated by a certain kind of white middle-class femininity. Such conventional beauty standards are especially on display this time of year, as we enter the annual pink orgy that is Breast Cancer Awareness Month (a “month” that now stretches its tentacles into September and November).

To be clear, I’m not talking about body image issues surrounding mastectomy, chemotherapy, radiation, and/or reconstruction here. I’m talking specifically about beauty standards, the pressure to return to “normal” femininity and behavior as quickly as possible (or preemptively in some cases), and the ways in which conventional femininity is repeatedly presented as a form of empowerment to women grappling with major health issues like BRCA mutations and cancer.

The idea that women can and should be pretty while undergoing mastectomy has a long institutional history in Reach for Recovery programs in the mid-twentieth century. Such programs helped women return to conventional gender roles as quickly as possible. They were given prostheses, wigs, and make up, and taught how to use them despite limited range of movement after disfiguring Halsted mastectomies.

Reach for Recovery not only helped women look their best more quickly, but also helped women hide the fact that they were undergoing treatment for breast cancer at all. To put it in Maren Klawiter’s terms, such programs upheld the “architecture of the breast cancer closet.” It’s a familiar sentiment to anyone who has paid any attention to Bright Pink’s annual corporate-sponsored tribute to heteronormative white middle-class beauty standards, Fabfest.

So for the record: you are not required to be pretty, ever, but you are especially not required to be pretty before, during, or after fucking surgery. Wearing makeup into surgery isn’t empowerment. It’s a displacement at best, pure patriarchy at worst.

The Ethics of Corporate HBOC and BRCA+ “Advocacy”

I’m feeling pretty pissy today about for-profit genetic corporations trying to co-opt BRCA+ and HBOC advocacy. I had a terrible fucking day full of HBOC-induced suffering. This was one of those days when I just felt cursed by being BRCA+. A day that involved not just one, but two emergency doctor visits, a whole day of sitting in waiting rooms, plenty of being patronized and jerked around, and a minor procedure that left me bleeding, crying, and defeated.

I came home exhausted and desperate to decompress, so I set myself up in my recliner with my comfy blanket, I put on some terrible TV show on Netflix, and I logged on to twitter to catch up on the day’s HBOC tweets. I found the #BRCA stream filled with sponsored tweets for a certain genetics company. Again. I cannot possibly be the only one who has noticed the spamming of the #BRCA hashtag with advertisements for this particular company’s genetic tests in the last few months. I’m over it.

Remember when Myriad Genetics set up that lame twitter account called @mysupport360 that was all “yay, BRCA+ empowerment! Give us yer money!” and tried to pretend it wasn’t related to their company? Andrea Downing, Teri Smieja, and I had a good time lampooning that lame attempt at using social media to lure in clients (this episode is documented over at Brave Bosom). Andrea also has this post on another one of Myriad’s unscrupulous attempts to dupe the HBOC community.

But Myriad Genetics aren’t the only ones playing this game. Other genetics corporates are using social media to draw in BRCA+ and HBOC patients. Forging friendships and alliances with individual patient advocates both within and without the BRCA+ community can be really wonderful for BRCA+ women, both personally (friendships with people in similar circumstances!) and also in terms of advocacy (strength in numbers!). The only problem is that some patients are being paid or given perks to advocate not only for their particular diseases or disabilities, but for particular genetic corporations.

I found this out the hard way when one of my favorite bloggers started spamming the #BRCA stream with advertisements for a certain genetics company. I tweeted her and asked what her particular relationship with that genetics company was. She direct messaged me and said they sponsor her advocacy, allowing her to do way more than she would be able to otherwise. Then she asked me to delete my tweet. I did, because I like most of her tweets. I’m not naming names here, because I respect this particular blogger’s writing and her advocacy is important (although I’m sure this post will piss her off and probably ruin our twitter friendship. That sucks.)

Recently, I’ve been noticing more of this sort of thing within the BRCA+ and larger cancer genetics community. Start paying attention and you’ll find lots of sponsored tweets–sponsored tweets that are never identified as sponsored, naturally. I expect that sort of behavior from Kim Kardashian, but I find the lack of transparency of sponsored posts in the HBOC and BRCA+ communities (both on twitter and other social media sites) profoundly disturbing.

Even more, I find the spamming of the #BRCA hashtag with tweets that are really ads for a genetics company particularly offensive because I consider that hashtag to be a lifeline to BRCA+ information, support, and genuine community building. I depend upon that hashtag for information and community every. single. day. No exaggeration.

I’m not saying people whose advocacy is being funded by genetic corporations are not actual advocates. In fact, the trend I’m noticing is that individual people start off as amateur advocates–they start blogs, they begin to tweet, they build websites, they post on BRCA+ message boards, etc.–and then are noticed by and recruited by genetics corporations who offer to help them expand their advocacy. It sounds awfully tempting.

Take, for instance, the #BeBRCAware campaign, which I first encountered at the Joining FORCEs conference in Philly. I asked the man at the booth what #BeBRCAware was all about. He told me that it was an effort to train women to become ambassadors for BRCA+ awareness. He said they even fly out potential advocates–if I recall correctly, to California–for this training. “Sign me up!” I thought.

After all, I already devote countless hours to BRCA+ and HBOC advocacy; it would be great to have some professional training and institutional support. And you know what, all this blogging and tweeting is hard work. I research stuff. I read lots of medical articles and tons of books to provide accurate information. I spend a lot of time talking to women who need emotional support or who are seeking resources. Advocacy is WORK and for me it’s an unpaid labor of love (I hate cliches, but it’s true in this case).

That’s when I noticed the small AstraZeneca logo on the booth and I was like “Oh, hells no.” Why? Because we can thank AstraZeneca for the clusterfuck that is Breast Cancer Awareness Month. Their unethical practices in jump starting Pinktober are very well documented. Here’s a quote (the tip of the iceberg really) from a frequently circulated article called “The Dark Side of Breast Cancer (Un)Awareness Month”:

“AstraZeneca, manufacturer of the blockbuster breast cancer drugs Arimidex and Tamoxifen, was formed through the merger of Astra AB and Zeneca Group (a pharmaceutical subsidiary of Imperial Chemical Industries) in 1999. Imperial Chemical Industries, a multinational corporation responsible for producing carcinogenic petrochemical derivatives such as vinyl chloride and pesticides, founded National Breast Cancer Awareness Month in 1985, in partnership with the American Cancer Society, in order to promote the widespread adoption of x-ray mammography, whose horrors we have documented elsewhere.

Sadly, Breast Cancer Awareness Month is a time of increasing awareness not of the preventable causes of breast cancer, but of the breast cancer industry’s insatiable need to both raise money for research into a pharmaceutical cure, and to promote its primary means of “prevention”: early detection via x-ray mammography.”

So basically AstraZeneca profits from producing products that give women breast cancer, profits from producing products that diagnose breast cancer, and then profits producing drugs that chemoprevent and also treat breast cancer. They’ve really got all their bases covered, don’t they? They profit from every single aspect of breast cancer risk and diagnosis. But it’s not in women’s best interests. And now they’ve set their sights on BRCA+ and HBOC women, because the Supreme Court nullified Myriad’s patent on BRCA testing.

(BTW, If you’re interested in AstraZeneca’s unethical practices, check out Gayle Sulik’s Pink Ribbon Blues,  Samantha King’s Pink Ribbons, Inc., and Maren Klawiter’s The Biopolitcs of Breast Cancer –all of them are required BRCA+ bookshelf reading.)

BRCAware

BeBRCAware has got a glossy twitter account and hashtag. They play the social media game way better than Myriad Genetics.  I see prominent BRCA+ advocates following this twitter account. Maybe they’re simply hate-following it. I hate-follow Myriad Genetics’s twitter account so I can stay on top of their unethical shenanigans. But I also see BRCA+ advocates posting pictures of themselves in the BeBRCAware photobooth at the Joining FORCEs conference (my photo of it above) celebrating their BRCA+ pride. Do they really trust AstraZeneca? Do they even realize what it means that AstraZeneca is promoting this campaign?

The profit motive here is obvious: the more people “advocating” for genetic testing, the more women will consider it and seek it out. Consequently, profits for corporate genetics (for testing itself), the mammogram industry, and Big Pharma (for chemoprevention) will grow. Post-Angelina Effect, genetic testing for BRCA testing has doubled. There’s a lot of money to be made off of desperate women from cancer-prone families who suspect they have a BRCA mutation. Corporations are happy to pay for advocacy to get in on this BRCA testing goldmine. It’s capitalism, stupid.

Have we learned nothing from the Myriad Genetics patent fiasco? Corporate genetics is about profits, not patients. Sure, patients may benefit from genetic testing, but genetic corporations are not motivated by altruism. They’re motivated by profits. And the profit motive has historically held up advancements in BRCA+ and HBOC research that could literally save women’s lives (which is why we have the Free the Data movement)

I’m not saying that strategic alliances with corporations should be utterly verboten. However, if you allow a genetics corporation to “sponsor” your advocacy, then you are entering an ethical minefield, even if you’re transparent about it (which most people aren’t).

The BRCA+ community needs to have a discussion about the ethics of for-profit genetics companies paying for “advocacy”–AKA advertising–from individual advocates with high profile presences within BRCA+ social media.

If you are a BRCA+, HBOC, or cancer genetics blogger, tweeter, or advocate taking money or free trips or other perks from genetics corporations, then you need to be very up front about that. Otherwise, you’re not an advocate. You’re an undercover employee of a genetics company.

 

Emotional Labor of the BRCA+ Closet

Recently I was reminded of just how profoundly alienating it can be to deal with ostensibly normal people when you’re BRCA+. (I say “ostensibly” because I suspect a lot of people have health issues that they simply don’t share, because of various privacy issues or attempts to avoid stigmatization) Most of us aren’t 100% out about our BRCA mutations. Even if you post it on Facebook or host a website about your HBOC experiences that includes your real name, there will still be people who didn’t get the memo. Consequently,  running into acquaintances and reconnecting with old friends and acquaintances is fraught territory: do you tell them you’re BRCA+? Do you tell them about your prophylactic mastectomy or the recent surveillance appointments that have swallowed your calendar? When they ask “how are you?” or “what’s been going on?”, do you answer honestly, redirect, or simply lie? Even if you’re upfront about your BRCA+ status, you continually face a choice about who, what, when, and how to tell people about it.

Adding to this social minefield is the fact that it is really hard to predict how any one person will react to the news. Occasionally, people are wonderful about it–they strike the right mix of empathy, concern, support, and/or humor. But many people react badly. Some get stricken looks of their faces. Some avoid eye contact. Some change the topic.  Some launch into trite “knowledge is power” speeches. Some want details that you don’t want to divulge. A lot of people glance anxiously at your chest and then hurriedly look away. Many people react as though the entire topic is just unseemly. Then, there are the people who develop support fatigue: they’re supportive at first, but then grow sick of your continuing problems–because a BRCA mutation doesn’t simply disappear after a convenient interval, it lasts a lifetime.

In her smart-as-hell book, The Biopolitics of Breast Cancer, Maren Klawiter talks about “the architecture of the breast cancer closet” (37). The breast cancer closet–like the GLBTQ closet–once forced women to hide their disfiguring and traumatizing Halsted mastectomies from their own families; now, it requires that women with breast cancer (and I would add, with BRCA mutations) assume optimistic attitudes and pinkwash their experiences. Klawiter notes that the architecture of the closet allows “stigmatizing discourses to continue circulating freely” (121).

There are many problems that women can encounter that relate to the BRCA+/HBOC closet (a sub-closet of the larger breast cancer closet, which at this point needs to be upgraded to a walk-in closet or maybe that gargantuan one Mr. Big builds for Carrie in the Sex and the City movie, metaphorically speaking). However, the issue I’m interested in here is the way that so many of us are half-in, half-out of that closet and that, no matter how “out” or “in” you are, it requires a lot of emotional labor to navigate it. This emotional labor adds up; it can be simply exhausting. And yet hiding deleterious test results and a BRCA+ status can be a burden as well. After all, discretion is its own kind of labor requiring indirection or subterfuge.

Work exacerbates these issues. Many of us work in environments that don’t acknowledge the body and may do so in the name of gender equity (i.e. we all know shouldn’t be talking about ladyparts at work). It’s hard to explain how discomfiting it is to be thrown into professional situations where other people feel free to talk about personal matters that are deemed “appropriate” because they fall within the range of normative, but which basically oblige you to closet your BRCA+ status–especially when your brain is running “BRCA+BRCA+BRCA+BRCA+” in anticipation of an upcoming biopsy or waiting for your daughter to get her genetic test results.

And what of actual labor–the kind we get paid for? Most women with BRCA mutations, just like people with breast cancer or other diseases, still need to work and face expectations of continued production. Even if you are transparent about your health issues, coworkers and supervisors expect you to work exactly the way you did before, despite the fact that you’re now tackling major emotional, psychological, and medical obstacles. It’s hard to focus on work while carrying the practical and psychological burdens that come with being in a cancer family distinguished by continuous disease and death. It’s equally hard to focus on work when you’re jumping through the endless hoops of surveillance, grappling with the debilitating side effects of chemoprevention, or recovering from risk-reducing surgery.

Women are often told to take on this kind of emotional labor: to downplay our own needs to make others comfortable or happy. In this way, the comfort of other people–family, friends, coworkers, etc.–is prioritized over the emotional and physical needs of BRCA+ women, often under the guise of propriety. I’m not sure what can be done to fix these problems, but I’m pretty damn sick of them.