I looked in the mirror this morning and saw my reflection. I’m not invisible.
After a phone conversation I had yesterday with a breast cancer organization, that is exactly how I felt: invisible.
I recently received a glossy newsletter from an organization dedicated to breast cancer awareness. It was filled with pink: pink-themed articles, fundraisers with everyone dressed in pink, volunteer opportunities featuring volunteers in pink, legislative updates with more pink, and even an announcement that the State Capitol fountain would glow pink on October 6th. The newsletter also highlighted research grant recipients, many of whom proudly wore pink.
Pink, pink, pink
My issue is not with the newsletter itself. It provides valuable information. My issue is that the organization represents only one color: pink.
Pink symbolizes general breast cancer awareness, hope, and survivor celebrations. But breast cancer is more than pink. It is pink and blue for male breast cancer. It is hot pink for inflammatory breast cancer. It is pink, teal, and green for those of us living with metastatic breast cancer (MBC)—the incurable Stage IV form of the disease.
After reading this issue, much like past issues, I did not feel that the organization was creating a “network of strength, knowledge, and compassion to support every person impacted by breast cancer.” It does an excellent job supporting those who fall under the traditional pink umbrella.
But what about the rest of us?
That question prompted my call to the organization. I left a message and promptly received a return call. After sharing my breast cancer journey and explaining why I reached out, I expected a conversation, or at least the question, “What could we do to be more inclusive?”
Instead, I heard, “I’m sorry. We can take your name off the mailing list.”
No discussion. No curiosity. No acknowledgment. Just an offer to remove me from the list.
My takeaway from that conversation was clear. The organization is interested only in pink. The blue, hot pink, teal, and green do not exist. We are invisible.
It is disheartening.
Why no concern?
One day, many of those currently represented by pink will also become pink, teal, and green. Studies show that 30% of individuals diagnosed with early-stage breast cancer will eventually develop metastatic breast cancer. Yet few people are told this reality or prepared for the possibility that breast cancer can return as Stage IV – the form of breast cancer with no cure.
Then they, too, will be invisible.
Those of us living with metastatic breast cancer deserve to be seen, acknowledged, and included in conversations surrounding breast cancer awareness, advocacy, research, and support. Awareness cannot stop at survivorship stories wrapped in pink ribbons. It must honestly represent the realities of what occurs for many beyond PINK. Also, is it too much to expect to make space for the people living with the reality of an incurable disease every single day?
We are here. We matter. And we should never be invisible.
— Brandi
You can help.
