My name is Tiffany Hawkins Williams, and I am a 55-year-old mother, daughter, wife, friend, and retired pediatric nurse practitioner. I was diagnosed with multiple myeloma in November 2013. That also makes me a 9-year survivor! I am also a myeloma health equity and disparities advocate.
Despite a 20+ year career in healthcare, I first learned of myeloma at diagnosis. I’m sure I had heard of it in years past, but not to the degree that it resonated before directly impacting my life.
Learning of my diagnosis wasn’t the most difficult part, telling my children was. When diagnosed, my son was a senior in high school and my daughter a sophomore in college. Watching the fear and devastation they experienced was far worse than learning of the diagnosis. I was as honest and transparent as possible with them along my journey, just as I promised. I allow them to ask questions and express their emotions; the good, the bad, and the ugly. Nothing was or is off limits.
In the disease space, the word “resilient” is often used. There’s something about the word resilient that causes me pause. I think it’s because I’ve come to believe that it’s often used in a way that implies (unintentionally) that the opposite of resilient means something is wrong with the way a person processes the disease state.
Merriam Webster defines resilient as being capable of withstanding shock without permanent deformation or rupture. Tending to recover from or adjust easily to misfortune or change.
Yet, my resiliency comes from love of family and drive to be the best mother, daughter, wife, and friend I can. It’s an intentional act of living my very best life.
In the context of the definition of resilient, I can’t say that I have recovered easily for the diagnosis of cancer or the change that has resulted from it. I am just fortunate to have a village of people who love me, good health insurance, a caring healthcare team, and access to resources and knowledge that makes it easier to recover and withstand the shock of cancer without permanent damage.
Then, also, coping with multiple myeloma as an African American woman in the U.S. healthcare system, comes with its own challenges. Like most African Americans, I experience microaggressions that contribute to disparities routinely as it relates to my myeloma journey. The most significant have been those experienced in the emergency department when assumptions are made about the legitimacy my pain, etc. However, I see the impact of disparities experienced by others in my community with myeloma. Disparities that impact one person in a community, affects all.
Despite all this, the myeloma community remains a source of inspiration for me. I have developed the most meaningful relationships/friendships through an amazing myeloma community. I am also inspired by the growing landscape of new and expanding treatment options.
Yet, I wish people knew the importance of being part of a myeloma network like a support group. Knowledge is power and this journey is so much easier when it’s traveled with others.
In closing, I’m excited about the IMF’s Myeloma ACTION Month campaign this year. It asks “What’s your #MYeloma STORY? If I was to summarize in one word what my myeloma story is, that word is Hope!