May 15, 2013 at 5:40 PM ET
Angelina Jolie’s admission that she underwent a preventive double mastectomy has a lot of people talking – and while raising awareness is invaluable, it inevitably becomes fodder for critics.
I should know: Three years ago, at the age of 28, I had a prophylactic double mastectomy and reconstructive surgery after learning I had a mutation of the BRCA1 gene.
I wrote about my experience for a number of websites, including TODAY, and tasted the vitriol and hate that can rain down from the Internet. Commenters made irrelevant remarks about my appearance, blasted me for wanting to have biological children despite my genetic mutation, and reassured me that I didn't really need a double mastectomy because cancer is a fungus that can be cured with baking soda. I received unsolicited emails from interlopers asking me to adopt the latest Ayurvedic diet, or to drink water with a base pH (all of which failed to provide peer-reviewed medical studies to confirm that this was, in fact, an actual preventive measure, and not mere quackery). As it was explained to me, I had chosen to mutilate myself on the mere chance I might get cancer. I wondered whether my critics would play Russian roulette with a gun that was 87 percent full of bullets.
I don't view what I did as mutilation. It was a necessary measure – but that doesn’t mean these words hurt any less.
Several commenters even disagreed when I referred to my surgery as a loss. From their perspective, I wasn't losing my breasts. While I am very pleased with the cosmetic result of my procedure, I do long for lost feelings. I miss nipple sensation. I miss the way my old breasts squished. It was indeed a loss for me.
Online commenters on articles about Jolie's admission have largely been supportive of her, but there are also those who are critical of her for a myriad of reasons. Some blame her lifestyle choices and scold her because genetic testing can be really expensive, while others simply say she should just accept that she’ll die one day.
To have the mutation is to play the odds: will I be in the 13-plus percent of BRCA1 women who never get breast cancer? Or should I roll the dice on stakes that could be as high as my life? Do I chance it, on the theory that if I get cancer, I’ll have to endure surgery, plus the misery of chemotherapy and radiation treatment?
In the wake of Jolie’s op-ed, some publications are debating whether the actress’ decision will influence women to have unnecessary double mastectomies. One publication even opined that Jolie’s New York Times op-ed was neither “classy” nor “brave.” Before people judge, they ought to put themselves in the star’s shoes. Deciding to have a mastectomy is a choice made under duress, and subjecting a private decision to public scrutiny is scary, yet Jolie did it anyway.
For the women and men navigating the murky waters of this genetic ambiguity, one thing is clear: it’s personal, and judgment is the last thing they need. Let’s applaud Jolie and others who are sharing their stories and promoting discussion of a very painful issue.
Lizzie Stark is a freelance journalist living in New Jersey. She is currently writing her second book, "Pandora's DNA: How the Breast Cancer Gene Changed Everything."