When you experience a trauma, you are suddenly the only person in the world who could ever feel what you’re feeling in that moment. You shrug off condolences or help from friends and family because they could never truly understand how broken you are. You are alone.
My aunt Susan, my father’s sister, was first diagnosed with breast cancer at 28; it returned twice, and she died 10 years after her initial diagnosis. I was given her name and with that, I assumed, her risk of cancer. In March 2015, after a quick blood test and a two-week waiting period, I learned I carried a BRCA1 mutation. I was handed a folder with a list of breast surgeons and gynecologic oncologists and sent on my way.
In the 30-seconds it took for a nurse practitioner to say the words, my entire life changed. Learning your mutation status without it being attached to a cancer diagnosis is like having a knife dangling over your head at all times. Your options are to wait and see if the knife cuts into you or you choose to remove the knife by undergoing preventative surgeries.
Who could understand something like this? The mutation, carried by one in 500 American women, is a rarity. At 27, I had involuntarily joined a club, and I didn’t know anyone in it.
When I arrived home that night, I asked for Google’s help in finding members of this unknown club. In the 191 days between learning about my mutation and undergoing a preventative double mastectomy, which I’d chosen instead of biannual surveillance, I stared at a computer screen in search of a cure to my loneliness. I read accounts of women much older than me, who discovered their BRCA mutation after a cancer diagnosis or after getting married or having kids. I couldn’t find anyone whose experience looked like my own: single, childless and freaked out.
I looked at the list of breast surgeons given to me by my doctor and settled on Mary Gemignani at Memorial Sloan Kettering. During my first visit to her office, she virtually introduced me to Caitlin Brodnick through the Web series “Screw You Cancer,” which chronicled the weeks leading up to her mastectomy, the surgery itself and her recovery. Brodnick didn’t know it yet — we wouldn’t meet in-person for another two and a half years — but she became my best friend in that moment.
Knowing Brodnick was out there comforted me as I prepared for my own surgery. But I still felt like I was flying blind. Then one night, an acquaintance of a friend messaged me over Facebook and invited me to the private BRCA Sisterhood Facebook group. The group now has 9,795 members, but in 2015, most of them were people I couldn’t relate to, similar to the accounts I’d seen online in those first few days after receiving my test results.
I continued to lurk and eventually posted a few questions relating to my mastectomy and interest in fertility preservation. Dozens of women stepped up. When I was concerned my nipples were necrotic after my surgery, they were willing to show me photos of their own to assuage my fears. Two women, Carly and Robyn, realized I was in the same “young and childless” subgroup. They both privately messaged me to introduce themselves and answer my questions. Robyn talked me through two rounds of egg freezing and even helped me secure funding for the expensive procedures. Carly told me that the fat grafting procedure many surgeons do during reconstruction was a total bitch that left her covered in bruises.
After nearly a year of messaging on Facebook, we started a group text with our other BRCA sister wife, Meg, who was already connected with Carly and Robyn. I talk to Carly, Robyn and Meg every day, but we’ve never met. We’re spread across the country with inconvenient schedules that make an in-person gathering difficult, but that doesn’t weaken our bond. Now, we exchange more than 25 messages in a day. Sometimes, they have nothing to do with our shared experience, but most of the time, we’re confiding in one another in ways our non-BRCA friends couldn’t understand.
The friends I’d made before learning my mutation status were supportive throughout every surgery. But once the actual wounds healed, they thought I was fine, so any BRCA-related comment from me felt like a complaint. My messages with Carly, Robyn and Meg are always read with the understanding that even after surgery, even though you’re healthy, the weight of the mutation remains.
I also searched for more BRCA+ people on Instagram. I decided to post about my own experience, using the tags #previvor and #brca, so that other women who felt as lonely as I once did could find support more easily. The #previvor tag now has more than 21,800 posts while the #brca tag has upward of 42,000. Women, and even some men who are BRCA+, from different countries and cities are forming some of their closest friendships using social media. Many of these friendships only exist online.
For all the online connections I made, from Carly, Robyn and Meg to the gaggle of women living in the United Kingdom chatting with me over WhatsApp, I still wanted to meet BRCA-affected people in person. Through a friend, I met Dani, who was looking for my advice on breast surgeries. We had coffee once, then again when she invited me to join the newly formed Young Leadership Council of the Basser Center. The center’s focus is on genetic testing, counseling and research of BRCA-related cancers, but the YLC serves to bridge the gap between science and community. There are now more than 70 members across 18 states, all of whom are affected by a BRCA-mutation.
Most members joined for the same reason I started Googling three years ago: to find people who understand this unique trauma and will see them through it. Before the YLC was formed, Jessica Newshel, 39, was mentored by people affiliated with Sharsheret and Bright Pink when she learned she carried a BRCA1 mutation. Grateful for the guidance and support she received, Newshel wanted to help others in her position. She has mentored eight high-risk women since joining the YLC.
At 26, Chié Dambara has already lost seven women in her family to cancer. Her cousin, the eighth person to get diagnosed, was the only one who survived. Her family had experienced loss as a result of cancer, but had never grappled with the in between space. Dambara, who carries the BRCA1 mutation, felt alone.
“No one really can understand the fear,” she said, expressing a sentiment I feel on a daily basis: “Being able to connect with other BRCA patients takes away that loneliness.”
I’ve never met most of the friends I’ve made through these online BRCA support groups, but I do feel less alone. I may only know some of these women by their Instagram handles, area codes and the make and model of their implants, but they understand my fears and experiences in ways I never anticipated.
