Until you go through it, it’s nearly impossible to know how you’ll react to life-changing health news. There’s no right or wrong way to deal with a new diagnosis, and there are many different ways to cope with news that will alter your future.
Paige More wasn’t expecting to use her diagnosis to form an empowering and inspiring movement — but that’s exactly what she did. After testing positive for the BRCA gene test (a test determining your genetic susceptibility to breast cancer), Paige turned to Instagram to document her subsequent health and wellness journey. Since the creation of her Instagram account and brand, Paige has helped thousands of women deal with the diagnoses in their own lives — whether that be the BRCA mutation, breast cancer, or a cancer diagnosis for a loved one.
To learn more about Paige’s incredible work, her refreshing outlook on her body and her life, and what’s next for her growing nonprofit work, read on.
First of all, let me say that I have followed your Instagram for quite awhile, and I am absolutely obsessed and inspired by all you do!
Wow, you know how to make a girl feel good! Thanks for the love.
Talking about something as personal as your health and your body is NOT easy — what motivated you to open up to the world about such an intimate piece of your life?
When I looked online for resources or to connect with other women who were going through the same thing as me, I came up pretty empty handed. What I was able to find was extremely scary and negative. That’s just not my personality, and I knew I wasn’t going to feel that way. So I closed my computer and made up my mind that I was going to turn this into a positive and empowering experience. I also knew that my youngest sister, Cammy, is 14 and hasn’t been tested yet. So I wanted to set an example for her.
What do you wish more people knew about the BRCA gene? How would someone know if they should get tested for BRCA mutation, and what steps should be taken thereafter?
I wish people knew that this isn’t a death sentence and that this doesn’t have to be the worst thing to ever happen to you. Knowledge is power, and knowing your risk and knowing that you have this increased risk of getting cancer allows you to take actions that other people who don’t know aren’t able to take. You get the chance to beat cancer before it gets the chance to come near you. I am not a doctor, so if you are wondering if you should get tested I would definitely seek out your medical care professional. There are also so many incredible at-home options now. But we can all start by talking to our family. Asking them what our family history is. And then go from there.
After your own diagnosis, how did the people in your life react? What was it like to share this information with family, friends, and coworkers?
When I first found out I carried the BRCA gene I barely told anyone. It’s not that I was embarrassed or ashamed, I was more just unsure of how you tell people this. Like, “Hey guys, super random but I have this gene that increases my risk of cancer. No biggie though, let’s grab brunch!”
At 22, it wasn’t a conversation any of my friends were having. I was also a really private person — which is ironic now since I share almost everything on my Instagram. I ended up hiding all of my fears and pretending to be strong in front of my few friends who did know and in front of my family.
Telling my boss was super intimidating. She is such a badass, and I wasn’t sure how she was going to react.
My boyfriend found out after we were only dating for a few months, and that changed our relationship significantly. It went from light and fun to okay we are really doing this! I am really lucky that he was so understanding. Most of my friends were extremely supportive but no one really knew what was happening. It wasn’t a conversation really being had in the media besides for Angelina Jolie.
Your Instagram account began as a way to chronicle your own journey through your double mastectomy and subsequent reconstructive surgeries and procedures. How did it evolve from there?
The Instagram account happened as a complete accident. I was never planning on sharing my story because I am actually a very private person. The night before my surgery, my boyfriend Justin asked me if he could post a photo of us together with this caption:
“As we welcome in the New Year, I’m wishing my beautiful lady the best of luck today as she takes on one of the most courageous and mature decisions one can make at our age by undergoing a double mastectomy. BRCA1 has nothing on you Paige and I wish you the best of luck in your surgery in the coming hours. I love you so much and I’ll be with you every step of the way!”
Justin is not social media savvy and rarely ever posts so this was such a touching moment for me. It meant the world that he wanted to show his support in such a public way to all of his friends and family. So after giving it some thought, I told him he could of course post this, but I would need to post something first to give those I hadn’t told the heads up. I was so nervous about this so I typed out this long explanation and posted it on Facebook right before I went into surgery. When I got out of surgery my family told me that my post exploded. There were about 1000 likes and hundred of comments. So many women were reaching out to me thanking me for sharing this and asking for guidance and more information, so that compelled me to start posting what I was going through on Instagram in the hopes of being the person I so badly needed to see before I made this huge decision.
What began as an Instagram account is now much more of a movement — you’ve created an incredible community for women struggling through the same issues. How did this come about — to what do you credit the success and virality of your mission?
I think my Instagram went “viral” because I wasn’t trying to make it go viral. I was just posting on Instagram trying to put out into the world what I needed. I didn’t feel represented or understood, so I tried to become that representation for other women affected by cancer. I think people appreciated how vulnerable I was and I think the media was shocked to see a 24-year-old woman with her whole life ahead of her not only making this huge decision but being so open about it. And the way I was documenting my experience wasn’t scary, it was sexy and it was empowering, because that’s the way I was feeling. It makes me so happy to now see all of these other accounts of women documenting their journeys. If you type in Previvor on Instagram, before it was only my account. Now there are hundreds of Previvor accounts. It is absolutely beautiful.
You’ve coined the terms “Breastie” and “Previvor.” What do those words mean?
Another organization actually trademarked the word Previvor, but I will never forget the way I felt when I heard that word. I felt so alone and isolated from my peers, and then I heard there was a term for what I was going through. I felt so much less alone. The definition of a Previvor is someone who is a survivor of a predisposition to cancer. So though I do consider myself a Previvor, I relate more to being a Breastie. The Breasties is a nonprofit organization that seeks to support women affected by breast and ovarian cancer through community and friendship. Whether you have a breast disease, cancer, or a genetic mutation, we believe in the power of connecting with women who “get it.” Breasties, to us, represents that special connection you feel to a fellow survivor, previvor, or carevivor. It doesn’t matter what you have been through, once you are connected it’s as if you have been breast friends forever.
You recently hosted your first ever Breastie Retreat — a free weekend away for women who had breast cancer, have the BRCA gene, or for those who acted as caregivers for a loved one with cancer (survivors, previvors, and carevivors). Tell us about the event and why it was so important to you.
For the past year, I have been putting together free events for The Breasties. From workout classes to potlucks in my apartment, we have been able to create this incredible community together. But I knew I wanted to do more. I knew I wanted to create a space for these women to just relax and get to be with their breast friends, other women who just get it. So with wellness in mind, I teamed up with four other women, and we put together the first ever Breastie retreat. We took 20 women up to the Poconos where we spent the weekend skiing and snowboarding, tubing, journaling, setting intentions, sharing our stories, and making life long friendships. I will never forget getting to the top of the mountain and watching these survivors, previvors, and carevivors ski and snowboard down. It was so symbolic of getting to the top of that hard and daunting mountain called cancer and getting ourselves down.
Are there more Breastie Retreats on the horizon? What about for those who don’t fall into the categories of survivor/previvor/carevivor but still want to become involved in the movement? How can they get involved in the support of women who ARE struggling through cancer, treatments, surgeries, and more?
When we launched The Breasties Retreats we weren’t expecting the response to be what it is. I expected a couple of local NY breasties to drive up for a fun bonding weekend. Instead, we had hundreds of women apply, and we had breasties fly in for the weekend from around the world. One breastie came in from Ireland, two from California, one from Boston, one from Michigan, etc. etc. This retreat really made me realize that I needed to take The Breasties to the next level. It lit a fire under me. So The Breasties is officially a nonprofit. Woo woo!! We announced three more retreats, and they were overfilled within one hour of announcing them. Our waitlist is around 300 Breasties. So we will be announcing a few more retreat dates in the upcoming weeks!!
The Breasties is all-inclusive, and I have a lot of women who follow me who are not directly affected by breast cancer yet consider themselves Breasties. I love that. I think its so important to include women who aren’t necessarily in the cancer community. The more awareness and the less stigma we have, the more women will feel comfortable getting information about their family history, will take action to find out their risk, and will be able to put their lives and their health into their own hands. It’s pretty powerful.
So if you want to be involved, come to an event. They are always free. Offer to donate your time or money so we can ensure all of our events stay free! That is super important to me. These women have been through enough from diagnoses, to treatments, to surgeries, the LAST thing they need to worry about is paying for support. The Breasties don’t leave anyone out, so welcome to the club!
One of the most impressive facets of your lifestyle, to me, is the fact that you’ve maintained a healthy eating and workout regimen even throughout your body’s trials. Why is it important for you to stay healthy in the midst of your struggles, and how exactly do you do so?
Learning how to love and accept my body post-surgery has been extremely difficult for me. My body has changed so much over the past year. I trained for my double mastectomy, so much so, that I was in the best shape of my life when I showed up to the hospital. It was as if I was training for battle. So when I came out of surgery and I had lost all of that strength, it was pretty devastating. And then I was incredibly busy meeting and speaking with Breasties, and that became my priority. I ended up losing a part of myself because I was giving so much and wasn’t making myself a priority.
I have learned that I need to take care of myself, too. Eating healthy and exercising are two proven ways you can reduce your risk of cancer. I took this huge preventative measure to ensure I would never get breast cancer and so I would get as much time here living as possible. I have a huge amount of previvor’s guilt, so I feel like I have to do everything I can to be as healthy as possible. My goals for this year are to really be conscious of what I am putting into my body. I am about to start whole30 which I am excited about. I am going to start yoga. But don’t get me wrong, I am allll about the churros and desserts. So it’s about moderation. Taking care of yourself but also LIVING YOUR LIFE!!! I never punish myself if I eat unhealthily or if I overindulge. I just put a little extra cardio into my regime, blast some music, and do my thing. I recently went to Australia on behalf of The Breasties and was having the time of my life, so much so that I came back and discovered I gained five pounds. I just laughed it off because I knew I enjoyed my trip, and this week I am going to be cooking healthy meals and making sure I workout. It’s all about balance.
What’s your best advice for someone who wants to get healthy for their own upcoming surgeries and procedures?
I would make sure you have supportive people around you. Our physical health is just as important as our mental health. I solely focused on my physical health and that definitely made my surgery go much smoother. My doctors were amazed at how my recovery went and how strong my body was before and after. But mentally I was a mess. This isn’t a walk in the park, and it’s definitely not a boob job. This is a huge life changing decision, and you lose a part of yourself, physically and mentally. I would recommend seeing a genetic counselor or a therapist before surgery to make sure you are ready. I struggled with anxiety and sadness after my mastectomy, which I have openly shared. Meditation ended up changing my life, and I can honestly say that even though recovery wasn’t easy, this was by far the best decision I have ever made in my life!
Additionally, what are your greatest words of wisdom for someone who just received a scary diagnosis or disappointing health-related news (for themselves or for a loved one)?
My greatest words of wisdom are SPEAK UP and REACH OUT! Do not expect people to understand what you need or to be able to read your mind. You need to TELL people what you need from them. When I was going through my recovery, I remember telling Justin that I needed to hear that he still thought I was beautiful. Of course, I am a strong independent woman and I felt sexy as hell, but I still wanted my partner to reaffirm those feelings. I told him exactly what I needed and it made our relationship so much stronger. I also want people to know that you don’t have to do this alone. One of the founders of The Breasties once said that we are not the anomaly our doctors tell us we are. There are so many of us going through this. So #reachout to someone you follow on Instagram and let them know that you need advice or that you need a friend. It will change your life.
What accomplishments are you most proud of?
I was in Australia hosting a Breastie event and my youngest sister Camryn was there with me. This was the first event she was at where she heard other Breasties tell their stories. As the women shared their stories she started to cry and my heart broke. I thought she was crying because she was scared or overwhelmed. But when we went back into the room she told me that she felt so much stronger after hearing the other Breastie’s tell their stories. She said she wasn’t afraid about getting tested and that if she did end up testing positive, she felt brave enough to have a preventative double mastectomy, too. It made me so proud to see how strong she is at such a young age and she is now looking into starting a Breastie club at her high school to raise more awareness amongst her peers. Seeing her take action made me so proud. We can move mountains, and we are.
You’re originally from California but now live in New York City. What do you love about NYC, and why is a great home base for you and for your growing brand?
I love everything about NY. Everyone I have met here who has heard my story wants to help. Restaurants donate their spaces and their food for our events. Workout studios host classes for free. Brands donate clothing and supplies for the Breasties. These actions are the reason why The Breasties exist.
Where do you see yourself in five years? What’s next for you and for all your Breasties?
In five years from now, I hope to have a headquarters in major cities where The Breasties can go to for support and for events. I hope to be running retreats, not only for those affected by breast and ovarian cancer but for people affected by other cancers who need support as well. I hope to be able to do an international Breastie tour where women are able to meet and connect. My goal will always be connecting people, because I don’t ever want anyone to feel as alone as I felt. That will never change.
What advice would you give to your own younger self?
I would tell my younger self to be gentle and to be kind and to start loving myself much earlier on. I spent a lot of time being self-critical and judging every action. We all need to focus on loving ourselves a bit more. The world would be a much nicer place!
Paige More is the Everygirl…
Guilty pleasure snack?
Most played song on your Spotify?
“Rise Up” – I listen to it every morning.
Ideal way to spend a Saturday?
With my Breasties!!
Last splurge purchase?
A Gucci belt
Next spot on your travel bucket list?