Greetings, I am Marsha Williamson, patient navigation member of Black Women Thriving East of the River (BWTEoR), a five-year breast cancer survivor, and I am a native to Washington, DC and have resided East of the River in Ward 7 for over 20 years. Hello, I am Manon Matchett, Co-Lead, BWTEoR and a 25-year plus resident of the Great Ward 8, located in the southeast quadrant of Washington, DC. Hi, I am Mindelyn Anderson, Founder + Principal of Mirror Group, LLC and LOVER of engaging visuals. We are delighted to share the transformative power of weaving together lived experience narratives into a collective journey.
Sometimes words on the page are not enough. Oftentimes the heart, soul, and depth of navigating inequitable systems, the toll on life and loved ones, and the promise of building equitable futures together can come to life through a visual process. When that is true for you and your social change initiative, we recommend a journey map.
We used a journey mapping process to develop the Cancer Navigation Journey Map, depicted below, to understand how women are navigating care and support.
The women who participated in the cancer navigation journey mapping activity are amazing. Everyone was adamant that they must share their story. It was important that others learned from their respective journeys to ensure optimal care and support. The journey mapping process was extremely important to our initiative! It allowed us to visualize and analyze an individual’s unique experience in their journey from discovery, recovery, and surviving breast cancer. We were able to compare, contrast, and identify the common elements of each person’s journey by seeing common roads, different twists and turns in the roads, and the end roads.
The interview for the journey map was probably the first time that I verbalized my journey from discovery to recovery. The interview gave me an opportunity to share my thought process of making crucial decisions; such as getting multiple doctor’s opinions; choosing the surgeon that I felt was best for me; deciding between a lumpectomy and mastectomy; and creating a village for the journey. I was asked if my son needed counseling to help him understand and process what was going on; this is something that I had never even thought of, so after the interview I did ask him.
A common theme with all the ladies was faith, family, and fight. Despite the diagnosis, all were confident that the prognosis was a long life. Not one person doubted her survivorship, and the amazing fortitude of all the women was inspiring.
Their respective focus was on their loved ones and making sure that everyone else was going to be okay. Different scenarios, but a recurring theme included:
“I told my children after their respective high school and college graduations.”
“I never told my mother or siblings because they already have so much to deal with on their own.”
“I told my Pastor but asked him to keep it private because so many in our congregation were carrying heavy burdens.”
The majority of women did not seek a second opinion. Each believed that their Doctor “knew” best even if the quality of care was not optimal. Many described a very sterile medical engagement that lacked compassion and humanity. It made me sad, mad and proud. These conflicting feelings highlighted the resiliency of these women as a constant state of existence. Yet, they are not dissuaded or discouraged by their circumstance.
The above insights and more informed the design of Black women-centered interventions in cancer navigation and healthcare workforce development in Washington, DC.
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