In Bustle's Braving BRCA column, writer Sara Altschule opens up about how she found community and solidarity with others facing a BRCA gene mutation diagnosis.
When I discovered I was BRCA positive — aka, my Breast Cancer Susceptibility Gene has a mutation that increases my risk of breast and ovarian cancers — I honestly didn’t know how I was going to manage this road on my own. Getting through life is hard enough: Add on the terrifying risk of cancer and potential surgeries and treatments, and you’ll need one heck of a support system. Luckily, I haven’t had to manage this journey all on my own. I have been able to lean on my friends, family, partner — hell, even strangers.
When I first was diagnosed, I had a hard time not blurting it out whenever anyone asked, "How are you?" Some people may find themselves wanting to hide under the covers after getting diagnosed, and never want to tell a soul. But others, like me, can't keep this life-changing information a secret. It felt like the elephant in the room every time I saw a friend who didn’t know about my diagnosis.
My closest friends knew right away, because they were the ones getting my frantic texts and calls. I decided to share my news with all my other friends and co-workers in person because it's difficult to explain via text, and honestly, no emoji does it justice. After I took some time to process all of my risks and options, and had come to a decision (double mastectomy), I was ready to share my story on social media. Deciding if, how, and when you want to tell others about your diagnosis is entirely up to you, and you have to find your most comfortable way to share this information.
That being said, sharing your BRCA mutation is absolutely essential when it comes to your family. If you are BRCA positive, then any biological full sibling you have has a 50 percent chance of also having the mutation, according to the National Cancer Institute. Furthermore, one of your biological parents passed the gene down to you — so one parent is going to have the gene mutation. After I learned I was BRCA 2 positive, both of my parents were tested, and we found out I had inherited the gene from my father's side. When sharing with family members who might also carry the mutation, it's often helpful to give them a copy of your genetic test results. It might also be helpful to prepare them with options for genetic counselors in their area, and some appropriate statistics and resources. That way, they aren't left with misinformation or overwhelming assumptions.
The main reason I shared my diagnosis with my friends, though, was because I knew I would need their support. I wasn't going to be able to get through this on my own, and I needed my best friends. "I get by with a little help from my friends" isn't just a Beatles lyric — it's the absolute truth. And boy oh boy, have I leaned on my friends and family this entire time.
Unfortunately, not everyone you choose to tell about your diagnosis will be as supportive as you need them to be. From hearing that a double mastectomy is like a "free boob job," to comments questioning if you're "ready" for surgery, or people saying, "Well, at least you don't have cancer" — I had to quickly learn that educating others is always better than an eye-roll. I explain how I worry about how I will finance my surgery, because my insurance doesn't cover it sufficiently. (So, not a free boob job.) And I tell them that I may not have cancer, but it sure feels scary. I share my personal experience with them because I believe if they hear it from me, it will make more of an impact — and they'll think twice before making comments like that in the future.
If your IRL friends don't get it, there are plenty of ways to find other kinds of support. Facing Our Risk of Cancer Empowered (FORCE) is an amazing organization that can help you find a local support group, and it also has a program that can match you with a BRCA positive peer who volunteers to help support you via phone calls. If you're not a traditional support group kind of gal, or you're looking for other resources, The Breasties is a non-profit organization that hosts wellness retreats and events for women affected by breast cancer and/or ovarian cancer.
What I've also found to be tremendously helpful are the various Facebook groups for women affected by breast cancer. There's any kind of BRCA Facebook group you might be looking for — wellness-related groups, women undergoing prophylactic double mastectomies, younger women who have the gene mutation, women who are living flat and fabulous, etc. You name it, you can find it. These women get it.
They understand your fears, your worries, and your constant Google searching. They're quick to share their own personal experience to help you, and offer support when you need it. I would have never realized that a backscratcher and stool softeners would be on my list of essential post-surgery items, but thanks to my group, they are now.
Even with all the moral support I was getting, I still found myself struggling with anxiety and sadness at times. I started seeing a therapist, so I could have a safe place to express my feelings and work through my emotions around my diagnosis. Whenever I wake up at 2 a.m. with my heart racing, I know it's time to call and schedule another appointment.
If you have the BRCA mutation too, welcome to the club. There are thousands of us here, all ready to help support you and lift you up at your lowest. Even though you've got your friends and family, there’s nothing like hearing from another person who’s struggling with the same emotions, risks, and scary decisions. Now I truly understand the meaning of "it takes a village."
Read more from Bustle's 'Braving BRCA' series: