Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools—We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
Why does shame seem to go along with a cancer diagnosis, and how can we help each other?
I have never really liked the idea of comparing cancer to a battle or thinking of myself as a soldier or a warrior. Cancer is a disease, not a battle or a war. Still, after breast cancer and melanoma and all the physical scars and body trauma from these cancers that I accumulated and continue to accumulate, I start to think about the term warrior a bit more — a scarred warrior.
If I am a warrior, I like the idea of living life courageously and surviving wounds that have left their mark on me. When I get to the end of life, I don't want to arrive pristine! I want to get there with bumps, dents, scars and a smile of gratitude that says, "Thank you, it was so worth all of it!" At the same time, I still struggle with cancer shame. Shame? Warrior shame?
When I received my first cancer diagnosis, I felt like I had somehow clumsily stepped into it. I felt like I had managed to step in the mess that everyone else around me seemed to be able to neatly skirt around. Had I been careless? Was it my fault? What had I done wrong? Had I exposed myself to chemicals or eaten something that others had been wise enough to avoid? I felt shame, not only because it happened to me, but also because my cancer pertained to my "lady" parts. My breasts and ovaries and uterus had somehow managed to go bad. I had failed in some way as a woman? That is what it felt like on some level, anyway.
It wasn't "right" that I felt this way about my breast cancer, but it was how I felt. Feelings do not have to come with a right or wrong judgment tag on them. Feelings just are. If I am a warrior, I am a shamed warrior on some level.
Why am I thinking about breast cancer shame now, eight years later? It comes up when I ponder which people in my life to let know about my prophylactic double mastectomy journey. Why am I ashamed? I don't want to over share or provide TMI (too much information) or kidnap every conversation.
One friend who had the double mastectomy with reconstruction said it was just something that she and her husband really knew about, and that was it. There is no right or wrong way to handle this, probably. As a writer, I will share with you because I want you to have knowledge because knowledge is power, and I don't want you to feel shame if you or someone in your life is also going through this experience.
We talk about cancer anxiety, fear of recurrence, and post-traumatic stress syndrome from the cancer disease and treatment. Maybe it is also time to include shame in the discussion and to learn improved ways to manage cancer shame as well? It is a feeling that seems somewhat unique to cancer compared to other diseases or things that can go wrong with our human bodies. It is good to live in a society where we can choose to keep our medical information personal and private, and yet it can feel a little lonely and isolating at times too.
I am grateful for the online support groups and discussions about the issues around cancer itself that are available now. I am grateful that Curetoday.com helps cancer patients and their loved ones have access to the cancer discussion as well. With open and improved communication, we can reduce the shame at the same time we reduce some of cancer's other side effects.