Written by Dr. Jennifer JJ Jones, BGLC Program Lead
Webster’s dictionary defines pain as a localized or generalized unpleasant bodily sensation or complex of sensations that cause mild to severe physical discomfort and emotional distress and typically results from bodily disorder (such as injury or disease). Since 2018, I have been a victim of chronic pain. I was re-diagnosed with breast cancer that year, and the surgery that I underwent changed my physical mobility. I describe what happened during my surgery as my body being cut in half. It was part of the reconstruction of my breast. For the next five years, I experienced pain every day, all day.
As I went through my first journey with breast cancer, I remember praying to God not to allow me to lose my mobility. I wanted to be able to take care of myself and not be a burden to my family. God blessed me with the ability to be as mobile as I had been, even after seven rounds of chemo and 32 rounds of radiation.
The second journey was so different; I was not prepared for the pain that I experienced after the surgery. I lost some of my capacity to reach above my head and I was moving slower. The doctor explained that I would experience spasms in my abdomen and that the numbness I felt would eventually awaken. Five years later, I have no feeling in the middle of my abdomen and the pain has not gone away. I have scar tissue that gets caught in my ribs causing a pain I cannot describe; I feel like I am going through labor all the time.
The All of Us Research Program has taught me about precision medicine and asking questions. I became a part of the program just as I was re-diagnosed with breast cancer. The knowledge I gained from working with the program empowered me to be a champion of my own health. I learned that most medications were not made for me, nor do they work for me as they do for those whom they were made for. I learned the importance of being a part of medical research and how that can benefit me and my family.
I don’t need my pain to be masked by painkillers and any other drug that does not cure the pain or answer the question of why I am constantly in pain. I want the doctors to be able to provide answers to my issue that is based on me and who I am, where I come from, my DNA, and all the things that focus on me and not the average White man. I am willing to do whatever it takes to protect my family from illness and empower them to be champions of their own health. I made a conscientious decision to be one in a million, and I encourage you to do the same.