I have put off writing about this for a long time. And with good reason, so I’m going to be up front about it. I don’t want your fucking advice. Let’s get that out of the way. If you know me, you know how gods damned strongly I feel about my body/my choice when it comes to every single damn thing. And let’s be honest here…we live in a world where women are assumed to not be able to make decisions abut their own health for themselves. Where we pass laws to punish them so that if they do have to make one decision or another, they will be thoroughly shamed for it. We have, all of us, been conditioned from birth to see women as delicate creatures incapable of making decisions without a little help. And that is infuriating. When I became sick over the summer, I started to talk about it here, and then dropped it because I just don’t want the advice. I don’t want to hear it. None of it. Same goes for this. Say anything you want. But if you start it with “you really should…” I will find and punch you. We good? Good.
So let’s talk. My family has learned recently that we carry the BRCA2 genetic mutation. If you don’t know what that is, don’t worry. I didn’t know, either, until I found out I might have it. Here are the cliff’s notes: it gives you the shittiest of shitty odds for developing breast or ovarian cancer (and several other cancers, as well). Initially, one relative tested positive for it. Then another. And then, yesterday, I learned that one more had it. Someone I love. And I’m talking about it now because she is getting some shit advice. Some unsolicited shit advice. So this is a PSA, for everyone who may hear this from a friend, a co-worker, a relative, or just a stranger on the bus (psst, strangers on the bus…stop talking to people about their personal shit. It’s weird. And put your pants on.)
Do not say:
1) No, you cannot get your breasts removed. You’re self-conscious enough as it is. (Seriously. Don’t fucking say this.)
2) This is god’s will. (No. It’s a genetic mutation. Stop it now. When science has an explanation for rain, you can’t keep claiming it’s Zeus making the thunder. Enough already.)
3) But don’t you want kids? (Maybe. But also, you’re an insensitive asshole.)
4) But you have two sons, don’t you want to try for your girl? (I get this even if I’m not talking about having all of my reproductive parts removed, so it’s really an all-encompassing PSA here. Never say this to people. Some of us aren’t trying to fill quotas. Some of us, in fact, are staring down the barrel of 35 and are really fucking tired and would love it if you could talk to us about something other than our ability to reproduce. Strangely enough, we have other interests and capabilities and you could ask about those sometimes, too.)
5) Will you really be a woman if you have no more woman parts? (Oh, hello, ignorance. Thank you for not only raising a really personal concern, but also for being grossly insensitive to anyone who doesn’t fit into your perfectly designed cis-normative world. How do you even know I identify as a woman now? Stop making assumptions based on what you can see on the surface. Forever.)
6) Your insurance won’t cover that. And if they do, they won’t cover the reconstructive surgery. You’ll be on your own there. (Shut up about my boobs already. Why do you assume I care this much about having them? Why do YOU care so much about whether I have them? Also, you don’t work for my insurance company. Stop making shit up based on what you THINK. It’s annoying.)
Here’s what you can say:
I’m so sorry. This sounds scary and like a very difficult decision to make. Do you want to talk about it?
That’s. It. Your opinion on this matter is to be offered only if solicited, and is to be presented in a gentle and empathetic manner. If you are not capable of this, you pretend to get an emergency phone call, say how sorry you are, and walk away. Here’s what YOU need to know in this situation: you are not going to present this person with new information. She just received the results of a genetic test. She didn’t order that on eBay. She met with and discussed the outcome with a medical professional. Then she googled forever. Your quick google search? That was nice of you to do. It really is wonderful that you wanted to learn more to support your friend. But you’re not supporting her by telling her what you find on WebMD as though it’s some groundbreaking shit that never would have occurred to her. This brings us back to paragraph one: no matter what you’ve been taught, women are fully capable of making decisions for themselves. Do not try to save her. She’s not your damsel, she’s your friend.
Now, specific to the friend, you might have next steps. Like jokes. Michele and I have been making ALL the jokes. Because this is how we deal. Do you have a friend going through this who likes jokes? Great! She gets to make the first joke. You carefully follow suit. You understand that the jokes could stop at any second. You understand that she just found out or is waiting to find out if she has a very high probability of getting cancer. You understand that with this information comes decisions. Decisions like what should she do. Should she have a prophylactic double mastectomy? Hysterectomy? Oophorectomy, which she never even knew was a thing but now she knows SO MUCH about? Will she be able to pay for things like this? Will she be able to take the time off of work? Will her company consider this to be elective and disapprove the time she’ll need for any surgeries, if that’s the route she decides to take? Enjoy your jokes, but don’t get butthurt when she stops laughing and starts crying because there’s only so much joking before she remembers that this is serious and it is happening to her.
So, are we good? Do we understand one another? Awesome. Now, let me tell you about me, guys. I have put this test off for many months, mostly due to the other health issues which I am still experiencing. I thought, eventually, this other business would be under control and I could deal with the next agenda item. But this most recent development has knocked me on my ass. And so next Thursday I will straddle up for my doctor and, after we make uncomfortable small talk while both pretending that he’s not poking around in my vagina and feeling me up while the conversation desperately tries to avoid even the shortest silence, we will arrange for my test. And when I get the results, I will share them with you. Not because I want your advice. But because I want your support. Because I’m not afraid to admit that I’m really afraid. I’m afraid for me. I’m afraid for my sons and nieces and brother and father and aunts and uncles and cousins.. So I’m going to talk about this. And I’m going to make so many jokes. And I might cry. And you can come along for the ride or back uncomfortably away from the conversation. I won’t judge you for either. But don’t diagnose me. Don’t tell me what you read on WebMD. And for the love of science, don’t reduce me to the sum of my parts. In the months I have had to think about this, I have leaned more and more to the “just get rid of them” resolution. Is that going to be a hard decision if it becomes a reality? I’m sure it will be. But I am not the sum total of my body parts. I am the sum total of my experiences. And while this could amount to an absolute shit experience, that experience will be more a part of who I am as a person than my breasts or my uterus or my ovaries have ever been. They have all done wonderful things. But they couldn’t have done them without me. And I’ll still be here, with or without them.
P.S. This could be an uncomfortable comments section, since this entire post is a rulebook detailing how you can talk to me. So instead of making the obligatory “I’m so sorry, Mel, I’m here for you” comments that I’m sure you absolutely mean but which will seem compulsory given the above, let’s talk about comebacks. The women (and possibly the men) in my life are all in for some infuriating conversations because not enough people read my blog and therefore won’t be briefed on the rules (you can do something about that, too. You see the share buttons. Do something). Your job, should you choose to accept it, is to fill the comments with the absolute best responses you can come up with to throw back at obnoxious people trying to make our decisions for us. Give us your best, internet. And know that we deeply love you for it.