How MBC Advocacy has Given Meaning to My Life
The first few years after my diagnosis with metastatic breast cancer, I did not connect with others with the disease and did not get involved in advocacy. I was too busy trying to stay alive, caring for my young son and still working to keep my mind off cancer. More than anything, I was too busy grieving.
I eventually left my job to focus solely on my health. After some time, I saw myself as an ‘experienced’ patient and got an urge to share my reality and knowledge in order to impact the lives of others. When my oncologist asked me to tell my story at a fundraiser for his research, I went for it. It was the first time I told my story in public. I did it and cried, as did people in the audience. The fundraiser was a huge success and that was when I first learned the power of simply sharing my story.
I wasn’t sure what my next step would be and Living Beyond Breast Cancer’s Hear My Voice volunteer training was the perfect guide to the cancer advocacy world. It’s a well-rounded overview of various paths to MBC advocacy. Through Hear My Voice, I was able to find my niche, which is research and policy advocacy.
Research advocacy allows me to connect with researchers and show them the realities of a real person living with the condition they study every day. When patients are involved in the research process, there is a sense of urgency and purpose.
Policy advocacy allows me to make a direct impact in MBC patients’ lives right now. While policymakers are often well-intentioned in designing policies that affect patients, only we patients know the real impact of such policies. It’s crucial that we make our voices heard.
I never planned on entering the world of cancer or knowing as much about breast cancer as I do. But it’s one of the cards I was dealt in life and while I will never be thankful for having cancer, it’s a big part of who I am, without defining who I am. There are plenty of negatives to living with a terminal illness, but I choose to focus on the positives.
My diagnosis has forced me to better understand what I want for my life and I rarely sweat the small stuff. Helping others through my advocacy work has given me meaning and purpose that I didn’t realize I longed. Lastly, while I by no means am compatible with every cancer patient, having in common this shock to the core does bring me one step closer to another person that has cancer. Some of the people that I have met in the cancer or advocacy world have become part of my core group of friends.
Editor's Note: Registration for the 2019 Metastatic Breast Cancer Symposium: Empowering You With Information & Support is currently closed as we have reached capacity. Registration is still available to view the programs by web stream.
Julia Maues has been living with metastatic breast cancer since 2013. She was diagnosed while pregnant with her son who is now a happy kindergartener. She is on the patient committee for the upcoming 2019 Breast Cancer Symposium: Empowering You With Information & Support in Washington, DC. You can read more about her on her website.