I am lousy at breaking news to people…even good news. When I was pregnant with my son I personally told a total of about 4 people before the impersonal mass announcement on Facebook (which I made my spouse do, and then just shared on my own page).
I’ve done some thinking about why this is, and the best I can come up with is that I don’t like being the center of attention (with one notable exception: when I’m performing) and I love to avoid difficult conversations about myself and my feelings.
Over the past couple of years I’ve been trying to challenge this truth about myself and allow more emotional openness in my relationships. Choosing when/how/to whom I disclose my BRCA status is the newest chapter in this process.
I like the idea of being tremendously transparent about what I’m going through…in theory at least. In this fantasy I can use my BRCA status as a platform to advocate for HBOC (Hereditary Breast & Ovarian Cancer) causes, educate others/raise awareness, and open myself up to receiving support. I’m just not quite ready to go there yet.
Why? There are so many fears and anxieties that come with disclosure. Will people understand? And if not, are they open to learning more? Will they think I’m crazy for leaning towards prophylactic surgeries? I don’t mind educating people who may be ignorant about what it means to have a BRCA mutation, but I DO NOT want to have to justify my thoughts, feelings, or actions to anyone. And I fear that with greater disclosure that may become inevitable.
So for now I’ve been settling for a middle ground. I published one post about BRCA on my personal Instagram, letting people know of the existence of this blog and providing the address if they expressed interest in reading more about my experience (which a few actually did, thank you!). I’ve told the closest members of family (some in person, some over the phone), a handful friends (who didn’t see the Instagram post), and one of my supervisors at work (to explain the abundance of sick time I’m taking for medical appointments over the next couple of months).
Overall, I’ve been happy with how people have responded and the support they have offered…but beyond explaining what this information means to me and what I’m thinking, I’m sort of at a loss for what to say next.
When they ask how I’m feeling, ask if I’m ok: Yes. Sure. I’m scared that I could already have cancer, anxious about how surgeries will change my body, and I wake up most mornings to the sound of a silent scream occurring in a dream that I cannot remember. But I am ok. There is nothing I can do about any of this right now accept take it day by day and wait. Just sit with this new information about a gene mutation that’s been with me all along and wait. Wait for appointments. Wait for tests. Then wait for results. Wait to make a plan. Wait for surgeries. Take each step as it comes.
When they ask if there’s anything they can do to help: I really don’t know. What is even supposed to help right now? Ensure me that even if the worst case scenario comes true and I die an early death like my mother, my son will be ok. Tell me that I’ll be able to have another healthy child before my ovaries are removed. Or tell me that even if I can’t, we can adopt, and that will be just as beautiful. Promise me that I will learn to love my post-surgery body, scars and all.
I know that no one can do that for me, it’s not reality. But those are the thoughts at keep me up at night.
But there are things that people can do…if I let them. If I open myself to the support.
Help me know that I am not defective. That these feelings and choices are valid. Affirm me. Educate yourself about BRCA. Meet for coffee after a doctors appointment. Check in about test results so I don’t always have to be the one breaking news. Just remind me that I’m not alone and I don’t always need to be strong…even if I don’t believe you.