Who Knew? Managing Privacy in Your Social Circle
After multiple scans, biopsies, lumpectomies, and a diagnosis of an early-stage breast cancer, I asked the doctor in charge of my breasts at the time, “Why me?” To which she responded, “I don’t know, Rosie, you just have shitty breasts.” Nice answer, and the impetus to change practices!
The following month as I was preparing to begin radiation treatment, I received a call from the genetic counselor indicating that I tested positive for a breast cancer gene mutation. I immediately called my new breast surgeon and oncologist, and both agreed that the only way to protect me from developing a future, more aggressive cancer was to have a double mastectomy.
Fear, panic, thoughts of running away — all of these things flowed in and out of my head. But I also felt that the only way I could make it to the operating table was with the support of my close family and friends. Here’s where things got a little tricky and when I learned a valuable lesson that is worth sharing.
When a person is scheduled for surgery, let’s say a gallbladder, appendix, even lung surgery, these are internal surgeries that no one can see after they are completed. Sure, you have scars, but they are covered by your clothing for the most part. However, having your breasts removed is a very personal experience and affects women on a different level than another surgery may. This can make you question your femininity, sexuality, attractiveness to your significant other and a whole host of other things. It’s hard to describe, unless you are actually in this space, how vulnerable you can feel going into this surgery. Breasts are on the outside of our bodies, and even though they are also covered with clothes, they are something that people look at — ESPECIALLY when they know something is up with them!
It’s super important to be very careful who you share your journey with and that you make it crystal clear what your expectations are concerning privacy.
Let me explain in greater detail: Upon learning that I was going to have a double mastectomy, I told my immediate family and some friends what was going on. My mistake was that I did not make it clear to anyone that they should not share this information with others. As a result, more people than I had anticipated – people I would have preferred NOT know — became privy to what I assumed was confidential information. When you live in a suburban, close-knit community such as mine, news like this flies through town. Instead of being my personal journey, it became “this month’s story.” Everyone knew. I could have taken out a full page ad in our local newspaper and fewer people would have known than had learned via word of mouth.
I felt wounded and betrayed that people I trusted with my story felt that they had the right to share it with others. That being said, it was partly my fault because I did not set boundaries by letting my people know that this information was for their ears only. I assumed that it was understood, but that was not the case. The net result was that not only did so-and-so’s friend know, but her husband and her kids knew — and this was very unsettling for me.
If I could turn the clocks back, I would have done a better job in the communications department. But the past is over for me and I have completely come to terms with people knowing about my surgery, so I turn to you to impart one piece of advice if you are about to embark on this journey: I encourage you to think long and hard about the circle of friends with whom you share your story, and even more importantly, to make it clear to them if you want to keep it private and confidential. Moving forward, you will avoid a lot of unsettling feelings and anxiety if you communicate your wishes clearly with your people. Physically, this journey is challenging enough. It will be easier emotionally if you are in control of and comfortable with who knows your story.