By Vanessa Herkert (aka @positively_titless)
You check it at your lunch break. You’re scrolling, sprawled on your bed, naked in your towel between texting your friends, “10 minutes away!” (I mean, it’s their own fault they still believe this.) You’re liking, screenshotting, stalking your ex-boyfriend’s new girlfriend’s profile down to 2015 trying not to accidentally “heart” anything.
You’re one of one BILLION Instagram users innocently snarking, shitting, scrolling, double-tapping any French bulldog photo you can get your thumb on. But in the era of cyber-bullying, and “doing it for the ‘gram”, it’s easy to surrender to praise posting; only posting what you KNOW will get those double taps, and make your followers hungry for more—it’s called a “feed” for a reason.
But what if this “feed” could feed confidence instead of scrutiny; feed a feeling of community in a time where isolation is only intensified by tapping on a square that opens a spinning kaleidoscope of other people’s meticulously curated realities.
Allow me to stray into my most isolated moment, then I’ll scroll back.
My grandmother, my aunt, and my mother, all passed away from breast cancer by 2014. I was a junior in college when my mom died, but it wasn’t a surprise. My family carries the BRCA2 genetic mutation, often referred to as “the breast cancer gene”, and I am lucky enough to have it, too (this will make sense later).
The BRCA2 gene is a tumor suppressor gene and we all have it. When mutated, it does the opposite; no longer stopping or slowing tumor growth and causing a significant risk of breast, ovarian, and pancreatic cancer along with melanoma. This, of course, is an oversimplification of a hard truth.
After finding out I, too, carry the genetic mutation in 2016, I waited to take any preventative action. I was fortunate to have many resources due to my family’s extensive cancer history, but I still felt lost and alone. I knew only one other person who carried the BRCA gene mutation outside of my family; so trying to explain what I was going through, or in some eyes had yet to go through, to friends was difficult and fucking annoying. It was a textbook example of really not understanding something until you have to “walk in someone else’s shoes”.
So, like any good self-diagnosing person, I turned to the internet. I attempted to find more information, more stories like my own, and per my therapist’s suggestion, I began searching for support groups. I found a few but was disheartened because what I discovered was focused on older women WITH cancer. And though my extensive QVC faux-fur robe collection may say otherwise, I wasn’t “old”, and I didn’t technically have cancer—just this nasty predisposition for cancer. Apparently, cancer can even be cliquey?
Luckily, a friend persuaded me to go on Instagram—the last place I would have turned for support—and this is where I found The Breasties. A community that is a Queen’s feast of soul food my mind so desperately needed.
Women, both with cancer and those with pre-dispositions and other genetic mutations were actually sharing their experiences with cancer. It was like Caring Bridge on crack. I found women with preventative mastectomies, or giving chemo updates, with huge smiles on their faces. Dishing up intimate details of their journeys post after post—I wanted seconds, thirds, give me a doggy bag to-go, dammit! My only experience with what cancer looked like was ugly, and my only reference for seeing mastectomy scars was limited to my mother’s, of which I never knew how she felt about. We never talked about it. Still, I was skeptical. Were The Breasties another curated reality? After some time when the curtain would be pulled back, would I be left disappointed scoffing at their stories while sitting on the toilet?
I knew I couldn’t let my cynicism stop me from seizing this opportunity, or at least giving it a try. So I jumped in. Over the next few months, a lot happened. I found Paige More and the three other co-founders who had just launched The Breasties. BeforeThe Breasties officially became a non-profit in March 2018, it was first conceptualized as an online community, then expanded to a few local meetups, and when I had found them they had just hosted their first retreat. Despite my skepticism of how a community like this, full of women going through a variety of journeys related to breast and reproductive cancer, could exist...I wanted in.
I attended The Breasties second-ever retreat in the Poconos. Explaining to my friends I was flying to NYC to be picked up by random women, who would then drive me to a stranger’s home in the mountains, AND THEN we were going to talk about cancer...I think my friends were genuinely worried about my decision-making skills (Again, why is this still a shock to them?).
And to my cynicism’s surprise, what I found that weekend was a community of strong, beautiful, diverse women, who despite all odds could come together and share their struggles, and victories, of their cancer diagnoses. All of this in addition to opening their arms for others to join alongside them. This was no support group—it was a movement of women empowering women to continue to shine bright on their darkest days.
Since then I have become an ambassador for The Breasties in Chicago. Helping expand this community with other local Chicago breasties by helping organize events and meetups for other women like us; a true feast for my mind and soul. Ultimately this prepared me for my greatest challenge in my life: taking preventative action.
I went through two rounds of egg retrievals to freeze my eggs to protect my future. In January of 2019, I had a preventative double mastectomy with reconstruction. It’s in this journey that Positively Titless (@positivelytitless) was then born, an Instagram account to document my decisions, embrace this new identity as a “previvor” of breast cancer, and hopefully feed others who are stuck in a famine that Instagram can so often create. Yes, I still have the BRCA2 gene, and yes, I still have more health decisions to make. But now, I never have to make them alone.
So, back to Instagram. I never thought Instagram would have gifted me an inclusive community—my “breasties”. They’re now my best friends and people who I never would have met if it were not for Instagram. This platform we use daily has become a tool for good in my eyes. The ability to share information, stories, and connect with people around the world is amazing. And I now see, 14 followers or 14 million, it's not about how many people you are reaching, but what you have to say to those people. You never know who you could inspire.
So, what’s your feed feeding?