“Social media has the power to positively change our lives if we let it.”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
Keeping up with social media has always been a struggle for me. But it’s never been that I was “too busy” or that I didn’t understand the platforms. The issue was that I didn’t know how to be “authentic” online. I think that’s something that a lot of us can relate to.
How do you balance talking about intimate aspects of your life while still being professional? How do you show a “day in the life” while not fully letting on that you haven’t changed out of your pajamas? How do you talk about your relationship while being respectful and still reserving privacy with your partner? How can you share negative seasons of your life without being a total Debbie Downer? It’s also really easy to start making negative comparisons about your life and the lives of those that you follow. Do people really do their hair and put on makeup every single day? Is anyone’s house that clean all of the time? What type of relationship involves someone picking you up and spinning you around in a picture-perfect embrace on a toilet paper run?
The answer to all of those questions is: “Only the unrealistic ones.” So go ahead and breathe a sigh of relief. But social media matters. It matters because it’s a direct way of speaking to our generation… and that’s a powerful thing.
I started becoming more active on social media in 2015. While Instagram had begun to grow in popularity, it was nothing like it is now. Back then, it was primarily an overly-edited and perfectly-filtered glimpse into the lives of a beautiful few. Today, it has transformed into a 24/7 display of people’s real lives. People now feel comfortable sharing their trials, as well as their triumphs. We see makeup-free faces, stretch marks, postpartum bodies. We see real life.
“The more I shared about the trials in my life, the more my channels began to grow.”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
And I think that represents a generational shift. We’re tired of seeing (and trying to live up to) these perfect lives. It wasn’t until I noticed things start to change that I realized just how inauthentic my online presence had become. I constantly felt like I was playing “catch up” with the trends, the lifestyle, and the never-ending display of perfection. I knew that my life looked nothing like my feed and I made a conscious effort to change that.
I threw caution to the wind and started talking about what was really going on in my life: undergoing a preventive double mastectomy at 26. I started sharing the way that I felt about my body post-surgery, the impact that it had on my relationship, and how it would change a lot of aspects of my future. Prior to my mastectomy, I had been a Miss USA and Miss America contestant, I was a full-time model and all of that had been put on hold to proactively remove my breasts in an effort to prevent breast cancer. I did this because by the time I turned 16, I had already lost my mother, grandmother, and great aunt to the disease, and I was determined not to suffer the same fate.
I was shocked to see that the more I shared about the trials in my life, the more my channels began to grow. At first, I thought it was just the rubbernecking effect—people slowing down to look at the damage. But as the years went by, a true community began to grow. That community included women who had already battled breast cancer, those who carried a gene mutation that increased their chances of developing cancer, those who were about to undergo preventive surgery, and even those who just wanted to learn how to better support their friends or family members in the same situation. It was wonderful to be able to talk to others who had been in my shoes and those several years out who could offer me some long term perspective on what life might look like when the “dust fully settled.”
Photo: Courtesy of Allyn Rose
What social media also did was introduce me to the struggles that many women were facing in learning about their options for breast reconstruction after a mastectomy. It got me thinking, “Why is there not a comprehensive resource for women undergoing this surgery? Why are women being forced to message strangers on the internet about these life-changing surgeries?” I put my head down and I got to work.
That’s when The Previvor was born. In October 2019, I launched my nonprofit’s website, a digital women’s health platform that allowed women to be fully informed about all of their choices surrounding mastectomy. As The Previvor grew, so did an even larger community of women who were able to support one another through this very challenging time in their lives. I couldn’t believe that something like social media, something that had given me anxiety for years, was now a vital part of my everyday life. And instead of causing me anxiety and FOMO, it was now bringing me fulfillment and a community of my own.
As the years went by, and I began to face new challenges like trying to start a family. Because of my family’s health history and being the carrier of a known gene mutation, I opted to undergo the IVF process, followed by genetic testing with Shady Grove Fertility. Because I knew that so many women who had undergone mastectomy were also carriers of the breast cancer gene mutations BRCA1 and BRCA2, I decided to publicly share my fertility journey. I hoped that it might remove some of the “fear of the unknown” from other women who may have to go down the same road in the future. I was blown away by the love and support that I received from women around the world. After 10 months of treatment, two egg retrievals, and an embryo transfer, I’m now 18 weeks pregnant with my first child. I really don’t know how I would have navigated this incredibly emotional experience without the support I received via social media.
It’s hard to imagine navigating the last five years without the people I met on these platforms. It gets a bad rap at times, but social media has the power to positively change our lives if we let it. So I encourage you to stop trying to “keep up” and start sharing your most authentic self. You never know where it might lead you.
“I encourage you to stop trying to ‘keep up’ and start sharing your most authentic self. You never know where it might lead you.”
—Allyn Rose, Women's Health Advocate & Founder of The Previvor Foundation
About the Author: As a 24-year-old Miss America contestant, Allyn Rose made headlines across the globe with the controversial decision to undergo a preventative double mastectomy after losing her mother, grandmother, and great aunt to breast cancer. Allyn's story inspired celebrities like Angelina Jolie and a new generation of women to take charge of their healthcare choices. Determined to encourage other women to know that their scars are beautiful, Allyn boldly became the first woman with a mastectomy to model for Sports Illustrated Swimsuit. She is the founder of The Previvor, a 501(c)(3) non-profit women's health platform, which serves as a resource for women undergoing mastectomy and the creator of the #SelfExamGram, a social media movement encouraging women to perform a monthly self-breast exam.
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