Sharing Your Cancer Diagnosis: Yay or Nay?
It is a very personal decision to share your diagnosis, and in light of recent celebrity deaths of stage IV cancer, the topic on whether to share or not to share has been swirling around in cancer circles.
Raising much needed awareness for terminal cancer
According to People Magazine, actor Kelly Preston died on July 12, 2020, after a two-year “battle” with breast cancer. "Choosing to keep her fight private, she had been undergoing medical treatment for some time, supported by her closest family and friends," the family rep says.1 Just one month later, Chadwick Boseman, beloved star of Black Panther, died at age 43 after four-years of silently living with colon cancer. The most liked tweet ever goes on to say, “Chadwick was diagnosed with stage III colon cancer in 2016 and battled with it these last four years as it progressed to stage IV."2 Many in the cancer community have expressed sentiments of frustration, myself included, that high-profile individuals could have used their platform to raise much-needed awareness and chose not to.
Silence can be deafening
In fact, their silence was deafening. Upon further consideration, however, I have changed my perspective. If I were Kelly Preston, would I want to spend my final months living in a fishbowl, the world watching as I slowly passed away? If I were Chadwick Boseman, would I have worried I wouldn’t be considered for the greatest role of my career-starring in one of the most influential movies of all time, Black Panther - if my cancer diagnosis was known? It is easy for us to judge, but really, the more I thought about it, the more I understood.
So much so, when I moved to a new city recently I seriously contemplated not telling anyone that I was living with stage IV cancer.
Then the thought of not mentioning made me feel as if I was turning my back on my brothers and sisters in cancerland. As if I was living with some big secret. Like it was something I should be ashamed of, or embarrassed by.
When really, while it isn’t the life I would have chosen for myself, I am proud of it. I am proud that I am able to endure all the mental, physical, and emotional toll of living with an incurable disease and still eke out a wonderfully happy existence for myself. I decided, if it were to somehow come up in conversation, I would mention it. Some people know, and some people don’t, and that’s okay.
Documenting my cancer experience on social media
In my personal life, I decided to document my cancer experience on social media using separate pages, such as for my blog, Wigs and Things. I explained to friends and family that I did not always want to be reminded of cancer every time I was online, and so my day-to-day cancer life would be posted distinctly. Now I only share significant cancer events, such as scan results or new treatment, to my personal pages. Most people who don’t know me and look at my personal page would not even know I was living with stage IV cancer, and this is by design. I found, for me personally, it was better for my emotional health to have a non-cancer space.
On the contrary to keeping one’s diagnosis a secret, I regularly see many of my metastatic peers' post on their personal social media feeds about their cancer experience. Often they talk about how they are terminal and dying, even when they are currently doing well and are stable. They are the opposite of the Kelly Prestons and Chadwick Bosemans of the world.
To be honest, I find myself to be a happy medium of both ends of the spectrum. I want to raise awareness for advanced cancer, and educate people through my own experience without living with metastatic disease in silence. However, I also want to retain normalcy. My life continues to revolve around what I love most; my family, friends, career, community. Not cancer. I never say I am terminal or dying. I am very much alive, actually.
After seeing it said over and over again I even asked my doctor, "Am I terminal and don’t realize it? Am I dying and in denial? When I tell people I have cancer, I don’t ever say those things. Should I?" She said, “One day, you will be terminal and dying, but that isn’t now. You don’t have to tell anyone you are terminal and dying, because you are not.”
When I share my diagnosis, I say, "I live with stage IV metastatic breast cancer. I receive chemotherapy and will be on treatment for life until there is a cure in my lifetime." In simpler terms, as I have told my children, I live with metastatic cancer, the kind that, typically, "doesn't go away".
Sharing your cancer diagnosis: yay or nay?
Mine is definitely a “yay”, but I am careful as to where, when, and how. I choose my words carefully. Do you share your diagnosis with others? If so, how do you explain it to people? For those do you who choose not to, why not? Please share your experience!
Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.
Have you ever changed your treatment regimen because you were experiencing side effects?