My Role As A Peer Supporter
Excerpted from remarks made during the February 7, 2017 Peer Support Training
As I do when I begin a conversation with a woman with whom I have been matched as a peer supporter, I will begin by briefly sharing my story. I do this as a peer supporter to give the person on the other end of the line a chance to get to know me a little, and to take the cue from my openness that they can be as open with me as they wish. I will do it here very briefly, just so that you can all get a sense of who I am.
Although my immediate family is extremely close, we were somewhat estranged from my extended family, and I had no way to know that there was a strong history of both breast and ovarian cancer in our family. I did not grow up worried or fearful of the possibility, and in fact, I was shocked when my parents told me, at the age of 35, that my father had tested positive for BRCA1. I don’t think I totally understood the ramifications even then, until I was tested and found out that I too was a carrier, and I was sent from the genetic counselor’s office at Mount Sinai directly to the oncology department to set up a meeting with an oncologist. I had my ovaries removed within six months of that date, and, after my sister who was also positive for BRCA was diagnosed with breast cancer for the second time, I had a prophylactic double mastectomy with a DIEP flap reconstruction.
After sharing the facts of my story, I allow the caller the chance to share her story, but I find she usually prefers to begin by asking many questions about my experience. Her need is often not to tell her story, but to ask specific questions to someone who has gone through what she has. Some of the questions are very practical. How long were you laid up? How did you choose what kind of reconstruction you had? Often, the questions start with the practical, but quickly move on to the emotional and or philosophical. Did your family members support your decision? What did you tell your kids? How do you feel now, 10 years later? Do you regret it?
I try and respond to the questions as honestly as I can, but also, I try to bring up as many topics that I can think of that I may be uniquely able to answer. Our conversations often include a lot of discussion about intimacy and how it is impacted by the various surgeries. How we feel about our own bodies. How we feel about not having more children. Our fears for our children. And I must say, the anonymity of the phone call allows us both to be comfortably open in discussing these topics. Of course, I am always clear that these decisions are so personal, there are so many individual factors that impact this decision, and that my choices were right for me, but may not be right for them.
I have been a peer supporter for Sharsheret for a long time, probably over 10 years. In that time, my feelings and ideas about this role has shifted. At the beginning, when my own surgery and experiences were fresher in my mind, the role was therapeutic for me as well as for the person I was supporting, I felt like this was something we were almost going through together. I actually had to remind myself to allow the caller to direct the conversation to the topics that were most concerning to her. As the years passed, in a way it is easier for me to be encouraging, to say with confidence, you can get through this, your life will be normal again, you will not always be spending all your moments thinking about this! With life experience, and with seeing so many close friends and family members dealing with this plague, I am also able to provide sincere encouragement and support to women deciding to have prophylactic surgery. I truly believe that I made a decision that saved my life, and I know that conviction comes through in our conversations.
I gain a lot from my role as a peer supporter. Although I feel strongly that my surgeries were the correct thing to do, I certainly have my moments of sadness and regret about what I am missing from my life. But every time I act as a peer supporter, I am reminded why I did them, and I feel at peace with my decision again. I am happy that I can help other women come to terms with decisions that they have to make, in any way that I can.