Facebook has been censoring real health issues and I would like to register a protest. Social media is nothing short of a miracle in my life for many reasons. Protecting important freedoms regarding it is important.
10 years ago I never would have believed I'd feel passionately about freedom of speech in social media. My cancer diagnosis and what I call my "emotional train wreck year" changed all that. Right now there is an urgent need to make some noise and get the attention of Facebook. I need your help to do that.
The situation is that the Facebook robotic surveillance system needs to be updated so that members of the BRCA cancer community can continue to share with and support each other through the breast cancer and mastectomy experience. The good news is that Facebook and its 1.39 billion users have created communities of people who help each other through life, including its crises by sharing support, spreading humor (I admit to loving those silly animal videos), quelling loneliness, and always being there when you need someone to "talk to" about something.
There are large, somewhat public, communities on Facebook, and there are small, closed communities, much like a cancer support group at your hospital.
This is where censorship becomes an issue. When I was diagnosed with breast cancer and the BRCA gene mutation, the BRCA and breast cancer closed groups on Facebook became a lifeline for me. Members of these highly supervised groups intimately shared about their experiences, including post-surgical reconstruction photos and stories that helped me make my surgical decisions. The range of experiences, the kindness, the understanding, and the ability to pose questions to several thousand women and men going through exactly what I was facing helped me tremendously - and I'm a physician.
This is a big life experience and Facebook plays an amazing role in it. Unfortunately, Facebook's robotic algorithms often shut down users if another user reports a photo, which, in turn, blocks the member from posting. I've seen it happen over and over again to group members in the 1.5 years that I have been an active member of these communities.
Being reported for posting your post-surgical photo on a closed group - either to get advice or to share your experience - is traumatic.
It also frightens members. When this first started happening group members contacted Facebook, whose initial response was to say that they officially allow the posting of post-mastectomy photos (as well as breast-feeding photos). Unfortunately, the robots didn't get the memo. They are not hip to the official policy, and group members continue to be banned from posting.
The BRCA and breast cancer community members are contacting Facebook but, as Eva Moon said in her recent Huffington Post article about the problem,
Repeated attempts to reach out to Facebook have resulted in silence 100 percent of the time. The robots are running the factory.
It's time to ask for our friends to help. Let's make some noise so Facebook notices. We want them to update the robot watchdogs, so that they function in line with Facebook policy. This will protect the BRCA cancer community so that we can all continue to support the men and women who are walking their mastectomy journey today. It forges a path for all health advocacy groups on Facebook too.
Let's protect our ability to share openly and support each other with exactly the sort of help that got me through my cancer train wreck. Dear readers please:
- Share this blog post.
- Share Eva Moon's Huffington Post article.
- Share the posts on your Facebook wall.
- Get your friends to like them.
- Post them on:
- Anywhere else where you are active in social media.
Being diagnosed with carrying a BRCA mutation is being hit by an emotional train wreck head on. The scramble to figure out what to do includes needing to learn about how breast removal and reconstruction actually lives out in the lives of those who have gone before you. When you add breast cancer and its treatment experience or ovarian cancer and its treatment, you have a deluge of informational and emotional needs and the BRCA Facebook support groups are a lifeline. They were for me and here is my story. I credit my straight path out of the disaster with the support I received from many people including the online BRCA Facebook communities. Mark Zuckerberg you have created a miracle. Please turn the talents of your team to protecting this aspect of it. Please create a reliable mechanism for the members of these highly supervised closed groups to share what they need to get through their emotional train wreck.
Readers, as many of you know, your support through my cancer experience has been one of the blessings I treasure from it. Thank you for letting me share this part of my life with you.
With warmth and gratitude,
Cynthia Bailey, MD Board Certified Dermatologist