Ask the Mutant: Faceboob -- An Open Letter to Facebook From My Breasts

04/17/2015 01:35 pm ET | Updated Jun 17, 2015

Scars... I have a few. Sixty inches of them to be exact. I measured. If I could lay them end to end, they'd reach from the floor to my ear. But that's OK. I've made peace with them over the past three years.

I have the BRCA1 genetic mutation -- the "Angelina Jolie" one that spikes breast cancer risk to 87 percent and ovarian cancer risk to 55 percent and I opted to have preventive surgeries rather than simply watch and wait for my plane to crash.

The scars might have been devastating, except for two things: One, the love of my husband and two, the support of a worldwide community of women who come together to help each other through the difficult initiation into our sisterhood. Sharing our fears with those who have gone before keeps us sane. Sharing our experiences with those who come after gives us purpose.

Facebook, with 1.39 billion active users, is the world's de facto forum. As such, it has a responsibility to its users -- at the very least, a responsibility to adhere to its own stated guidelines.

According to an article published March 15 in The New York Times, "[Facebook] always allow[s] photos of women actively engaged in breastfeeding or showing breasts with post-mastectomy scarring."

But we -- the ones with the scars -- have not found that to be the case. Not even in closed private groups.

Karen Malkin-Lazarovitz is the founder of the private Facebook group BRCA Sisterhood. It is the largest hereditary breast and ovarian cancer support group on Facebook with over 4,500 members, and one of many groups for women dealing with mastectomy.

Karen screens every membership request and makes sure women know in advance that breast images are allowed. She also provides instructions on how to hide the group's posts from their news feeds if they wish. But despite that care, images posted to the group frequently get reported to Facebook as inappropriate. It's the Internet, after all, and you can't MAKE people read your guidelines or understand them. What can you do?

Apparently, not much. Despite Facebook's assertion that these images are allowed -- in public posts even -- their consistent response is to punish the people posting the images -- in private groups even -- by banning them from posting. It has had a chilling effect on the willingness of women to participate, or even remain members to these groups.

Let me be clear: Sharing images is essential to the mission of these groups -- often critical to relieving the mental anguish of women dealing with a terrifying, life-altering experience. Without that, we're alone with our wounds, wondering if a patch of redness is normal or a reason to run to the ER, wondering if there's hope we'll ever look good again, or simply sharing joy at being on the other side of hard journey. It would be nice if the people reporting images got that, but it's not the real problem. In large groups there will always be people with differing levels of understanding. The real problem is Facebook.

Repeated attempts to reach out to Facebook have resulted in silence 100 percent of the time. The robots are running the factory. So I'm reaching out to you instead. Facebook has responded to public pressure in the past, if it gets noisy enough. My call to you is to make some noise about this. We have power in numbers. Share this post or others on the subject. Write to Facebook. Blog, like, sing, shout, dance or knit about the it -- whatever it takes:

Facebook: Stop punishing and banning people who post images that are in accordance with your own stated guidelines. Find a way to do it now.

We are the women who know how to fight and you really don't want to mess with us.