How I’m Using Social Media to Advocate for Black Women
Summer symbolizes freedom, growth, family time, rekindled friendships, exploration, sunshine and rest. This is how I view this welcoming season. However, this summer was overshadowed by the uncertainties of COVID-19. Despite the limitations in place due to the pandemic, the scent of summer fluttered in the air. I had optimism about future work projects that I was passionate about. I was excited to enjoy social distancing in friends’ backyards with a relaxing beverage and became all riled up with encouragement while watching my niece’s and nephew’s outdoor games. This all came to a complete stop in the bewitching month of July.
In early July of 2020, I noticed a lump in my left breast. Fortunately, I have a doctor who scheduled my appointment right away. After an inconclusive mammogram and ultrasound, a biopsy was scheduled. On August 10th, 2020, at the age of 46, I received the call that I was diagnosed with breast cancer.
Hearing this news catapulted my emotions into several directions. It ignited so many questions – first, the operational type questions: How will my family react? How will this impact my family? How do I tell my family? What do I tell my students and friends? What do I tell my employer? What will my students and friends think? What will be my options? What does a lumpectomy or mastectomy entail and what will my breasts look like? Then the questions changed to philosophical questions: Was this my destiny? Am I being superficial with being concerned with hair loss and breast surgery? Should I not be blessed that I have made it to the age of 46? What do I want to be remembered for? What unfinished business do I have left in my life? Did I live my best life? What can I do to start living my best life?
It is unfortunate that it can take a life altering situation to wake one’s spirit, but I am definitely awake now since hearing my diagnosis. I have decided not to plan for the future and to focus on the now and what I can control. I listened attentively when I spoke to the medical team and I had my own personal medical notebook to document research, breast cancer survivors’ suggestions based on their experiences and my medical team’s updates regarding my treatment and next steps. Having a notebook was crucial; it allowed me to refer to my notes because all the medical jargon can become quite overwhelming.
Several appointments were scheduled to meet with the surgeon to discuss options and next steps. Soon after my lumpectomy, I was finally told I was at stage 2 and informed that I had to do chemotherapy and radiation due to my grade 3 cancer cells which are known to be fast growing and aggressive. I have just reached the end of my chemotherapy treatment and it has been quite a journey. Now I have to prepare my mind and body for the next stage of treatment – four weeks of radiation.
Since my diagnosis, it has become important to make all aspects of my journey visible and to not hide or be ashamed of my personal challenges. Sharing has been immensely therapeutic for me, and discussing my experiences with cancer on social media has guided me in processing my own thoughts, and encouraged me to take time to reflect on where I am in my life and where I would like to go in the future.
As an educator, I love to learn so I became curious and jumped into the world of Google to educate myself. While this may have not been the best idea, since we are isolated in this pandemic, what is a person to do? I began comparing myself with other women who were diagnosed with the same stage as me and read both the narratives of the cancer patients and survivors, while also reading medical jargon and statistics. Through online research, I had discovered the following: in general, extensive research is being done, mortality rates are decreasing, and new research methods and treatments are available. However, I also discovered that there was insufficient data and little information regarding Black women diagnosed with cancer. Black women are diagnosed with cancer in their early years, but testing is not addressed and data regarding mortality rates in Black women is scarce (even though what I have found is that mortality rates are high compared to White women). Therefore, sharing my journey is not only about breast cancer awareness, but it is an opportunity to bring awareness to the experiences of women of colour. As a Black parent of a 23 year-old daughter, and having two sisters who are also parents, this propelled me to make my voice stronger. My goal is to use my platform to represent and amplify voices of women of colour, especially Black women, advocate for change, and encourage other women of colour to see their doctor immediately if they notice any breast abnormalities. If I can help one person, then I have made a difference. Everyone has a purpose, and now mine is to advocate for inequity and disparities in both the healthcare and education system.
I believe sharing my journey has been impactful. People have been compassionate and supportive. I’ve received lots of messages from people – many of whom I don’t even know – reaching out to offer prayers and words of support. Many have said they had no idea what this process looked like before hearing my story, and this is why I decided to share my journey. Before my own experience, I too was not aware of the process, treatment options, and implications of chemotherapy and radiation. Discovering that I was not aware of what others were truly going through was disappointing to me, because I wish I could have been more helpful, or have brought more awareness to their emotional and physical challenges. People are apprehensive to talk about what cancer looks like. I was too, before I lived it. This is why it is imperative for me to share my story. By doing so, I have seen people starting to unveil their truths and lived experiences.
I have met other women facing similar challenges with breast cancer treatment. One common challenge is losing your hair. Sharing this part of my journey was difficult because society associates beauty with hair. My bald head and the various wigs I have tried on social media has been cathartic and liberating. Women are asking me to share videos of me trying on wigs, which is an opportunity to show that losing one’s hair is temporary and it is okay to have a little fun with changing one’s look.
Taking people through my journey on social media has been a positive experience. Before my diagnosis, I was rarely on social media and would deactivate my accounts for months. Today I am willing to share the good, the hopeful, the doubtful and the unattractive side, to be open and honest about my experiences. I’ve met strangers across the world through social media who have sent me encouraging comments, and I welcome their ongoing support, especially with the COVID restrictions limiting human connection and interaction. Using social media to advocate not only for myself, but for others has been a rewarding experience and I am fortunate to have this opportunity to use my voice to support, educate and encourage others. – Melissa Allder
Have you checked out Rethink’s new resource Uncovered: A Breast Recognition Project? It focuses on the breast cancer experience of Black women, through powerful imagery and real women’s stories that shine a light on the physical and emotional scars of breast cancer. Uncovered was created in collaboration with Michelle Audoin and developed in response to the significant underrepresentation of, and lack of support for, Black women and women of colour in the breast cancer community. Our hope is to educate all people, including healthcare providers, on the unique needs of Black women with breast cancer, so they are better equipped to support all the women they care for. Learn more about the resource here.