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.