From patient to advocate

My advocacy began when I was diagnosed with breast cancer in 2014. First, I advocated for myself, as I navigated the health care system. Then, as I joined support groups and attended cancer-related events, I became an advocate for others. The saying, “Make your mess your message” deeply resonated with me.

I am part of the Young Survival Coalition’s RISE (Respected Influencers through Science and Education) Advocate program. We receive training and participate in events, such as the recent National Breast Cancer Coalition (NBCC) Advocate Leadership Summit and Lobby Day, which took place, April 28 through May 1, in Washington, D.C. Formed with a mission to end breast cancer, NBCC has created a sense of urgency with their Breast Cancer Deadline 2020. Advocates play an essential role in influencing public policy and directing how research dollars are spent.

Facing what-ifs and doubt

Like when I travelled to Peru with A Fresh Chapter, I worried about leaving my family. Over the past school year, my son struggled in and out of the classroom. His anxiety became debilitating, which spiraled into depression and a number of troubling behaviors. I seemed to live life on call, receiving urgent messages about the latest incident at school. What would happen if my son had a bad day, and I was all the way across the country?

Part of me wanted to stay home, just to be safe. The other part wanted to fulfill my commitment as an advocate. I wanted to show my children that I pursued my interests, even in hard times, and people valued my contribution. While at the Summit, I attended workshops, networked with peers and had my first experience lobbying on Capitol Hill.

What am I doing here? I asked myself, feeling lost in the sea of highly motivated women and men. They all seemed certain they were in the right place. Meanwhile, I questioned if I had the skills needed to make a difference. What if I failed? 

The power of a story

At events like the NBCC Summit, I see the super advocates, the ones who lead workshops, win awards, sit on panels or moderate them. Over dinner one evening, a fellow advocate, diagnosed with cancer in her early 20s, confessed that she did not feel like she could do enough, with her limited time and skills.

It amazed me that someone who overcame so much felt inadequate. I quickly responded with what I learned at my first advocacy workshop. “The best way to be an advocate is to tell your story.” Her story was compelling, particularly because she is such a young survivor. “Whatever you have to give is enough,” I told her. As I offered this support, I realized I needed to remember this advice.

On Lobby Day, the energy and excitement among the group was infectious. As the advocates and I walked from meeting to meeting, I started to feel more confident. We met with staff, since the Senators and representatives were on recess.  A specially trained team leader led each meeting, focusing on the legislative priorities of NBCC. When I was asked to speak, it was to share my personal story. I stepped through my uncertainty and took advantage of the opportunity to be heard. When the conversation focused on policy, the staff listened attentively and occasionally nodded. When we shared our personal stories, though, I noticed gasps of surprise, as they made the connection that we were cancer survivors. Our requests were personal and suddenly carried a sense of urgency. 

Getting out of the comfort zone

So much of advocacy is out of my comfort zone. Maybe that is why I’m drawn to it. I love the challenge, the opportunity to travel, to work alongside others who have faced the same adversity and together, to strive to make a difference. I wanted to advocate for many reasons—mainly to help other survivors feel less alone. My advocacy led me to a community of survivors and champions, who love learning and pushing themselves to be bold. They help me believe in myself, when I get caught up in doubt. After spending a day lobbying, such a contrast to my everyday life, I returned home feeling like I could accomplish anything.