Thursday, November 11, 2010

Don't Define Me By My Cancer

People who have lived through cancer just want to get on with their lives—head into the future like everybody else, free of cancer, free of its memory. That’s why the labels others affix to us can make us especially testy.

Take, for example, the label survivor. Please. It look me a while after diagnosis to understand why this word annoyed those who have survived. Finally, when I started to be lumped into that category, I got it. The word defines us by our disease. And how can we move past this diagnosis if we are forever labeled according to it?

Some women prefer the word thriver, and I get that. It is active—it shows we are fully engaged in life. It’s a positive, affirming word. Surviver, by contrast, means we exist. We didn’t die. Not dying is a good thing—an extremely good thing— but it is not the only thing. If it is, then we are not really living, are we?

Still, I need no label. I am Pat. I had breast cancer and I, thank God, got over it.

What do we call survivors of heart attacks? I call them Hank and Herb and Mike. What do we call survivors of strokes? I call them Jean and Gary. Cancer need not be in a category of its own—the big scary disease. Those of us who have weathered its storms want to move beyond it. We're wives, mothers, daughters, grandmothers, aunts, sisters, friends, lovers. We're proud of these roles and find these labels wonderful--they make us fit in, feel a part of the world, of society, of our families, our communities.

Survivor sets us apart, and we’re tired of being special in a cancer sort of way.

We're also writers, doctors, teachers, editors, students, artists, photographers, computer specialists, managers, volunteers, and tote a laundry list of other accomplishments. We have worked to earn these labels and encourage you to see us for what we have done, not what was done to us.

Then there is the issue of our courageous battle. I had several people tell me that I was so courageous while I went through treatment. My reaction was usually a highly articulate, “huh?” It is not courage to put one foot in front of another and just do what you need to do, usually while terrified and confused.

Some of us do it with less complaint than others, but that is not courage. It is just good luck—a positive attitude, perhaps a better diagnosis, smoother response to treatment, or a support system that keeps us grounded.

To me, courage refers to soldiers in Afghanistan, or the person who jumps into a raging river to save a woman whose boat has capsized, or politicians voting for what they know is right but might not get them reelected.

And, frankly, it applies more to our caregivers—like my husband, who never let me say, “I have cancer,” correcting me to “You had cancer.” Or the parents of children with cancer who have to fight for proper care and deal with the financial hit while supporting a confused and sick child. Or the children watching their mother lose her hair and reminding her how beautiful she is and how much they love her, all the while hiding their own fear.

The problem with calling cancer patients courageous, again, is that it sets us apart from everybody else. We are the Person with Cancer. How scary. How tragic.

Does an obituary say a person died of a courageous battle with heart disease? Why not? Why is cancer elevated to such a stage?

And why does it bother us?

It’s a problem because when you are constantly told you need courage to get through this journey, it makes the road seem that much rougher, the climb that much steeper, the destination that much less clear.

All we want is to be normal again. To be just a person who once got sick but hopes not to get sick again. As someone who is moving on, leaving cancer far behind, kicking dust in its nasty old face.

Read more about living past a diagnosis of TNBC in my book, Surviving Triple-Negative Breast Cancer.

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Anonymous said...

I think that if anything dealing with the psychological/emotional impact of cancer is included in the course of treatment, it should be directed toward helping patients (at any stage) NOT identify themselves entirely with their disease.
Over a year ago, I asked the dietician affiliated with my radiation oncologist for some guidance with my diet. In the years before I was diagnosed, I had gained weight and really felt like I wasn't in control when it came to healthy eating. In response she told me some story of a woman at stage iv who pursued all sorts of alternative diet supplements and traveled to foreign countries seeking out cures, etc. She then just looked at me and said, "you don't want me to tell you what to eat, do you?" Well, I wanted some practical guidance.
Flash forward to this year when I had the great idea to join a weight loss program. Yes, I finally realized that I could pursue a weight loss program that had nothing to do with the fact that I had been diagnosed with cancer. I realized that I can take care of myself just for the sake of taking care of myself. So, I have some structured guidance, am losing weight and eating well, plus I get to go to support meetings weekly that aren't about cancer (and I don't mention cancer to anyone there). Now when I think about that meeting with the dietician, I am horrified. In the context of my overall well-being, health and quality of life, losing weight, eating well and exercising are important. The fact that I was diagnosed and treated for cancer doesn't mean that those things (my overall well-being, health and quality of life) suddenly become insignificant, or worse yet, elusive. There were issues predating my diagnosis; my diagnosis might really bring a lot of these issues to my attention in a pretty dramatic way, but not all quality of life and health issues have to have cancer as their immediate or direct focus (even if I have had cancer!). That a dietician couldn't discuss diet with someone who had been diagnosed with cancer without zooming in on a worse case scenario is just terrible. Most people survive a breast cancer diagnosis, and every one deserves to have their desire for a quality of life taken seriously. If people are routinely reduced to their disease, how can quality of life be achieved?

Anonymous said...

Thank you for this! I have been adamant about not calling myself a survivor! I realize that the intent is pure but I also hate the comments about being someone's hero. Huh?? This marketing hype in our culture about breast cancer is a cognitive defense mechanism that people use to divorce themselves from their own fear. Unfortunately, we're the ones who must deal with its effects. I won't take it on. Just the other day, I had a pharmacy tech tell me how much more attractive my long hair is than the short hair in my driver's license photo. I hesitated for a split second -- should I tell her the short hair was from chemo and I hated it too? I decided not to say a word because I don't want that label of cancer victim survivor whatever! I just smiled, thanked her, and went out to my car. I cried because the comment brought back all the fear and isolation that I had felt at the time. Paradoxically, the comment made me feel more alone today because I could not simply say why my hair was short without it conjuring up up a standard cultural response, such as, "oh you poor thing" or "you're a survivor.

Before she died of metastatic breast cancer, my best friend said how much the label survivor was offensive to her -- what was she -- a loser? Somehow survivor connotes that you had something to do with the fact that you're still alive. But for those who die from cancer, it is not necessarily because they failed to do that magic thing to survive. If only the media and well meaning people would realize how that label affects those who face being killed by breast cancer! Again, I see it as a psychological defense mechanism -- if we had something to do with our survival, then somehow the randomness and arbitrary nature of the disease is not so scary. It's a safe world, not a terrifying one. Yeah, right.

I also detest the pink ribbons and license plates and other products that are now everywhere as a constant reminder of the disease. Like you, I ask why is breast cancer more special than say, prostate cancer, or diabetes? Every day I am reminded that I had cancer when I just want to get on with my life. I refuse to be defined by that one experience in a lifetime of illnesses and experiences. Thanks again for a great posting that says something that needs to be heard by more people.

Susan said...

I so agree with you. I growled all the way through one of those Cancer walks because they wanted me to wear a "survivor" banner. Just this weekend I was talking with my girls (ages 23 and 20) and said what I've said before which is "I can't identify with the image of fighting cancer." Through chemotherapy, I didn't feel like I was fighting anything, though if there were something relevant that I could have fought, I gladly would have. Instead I felt love and gratitude for those who helped me, and I was living, and loving my way through each day. If there is a fight, it is with my mind, not to let fear or anger block me from enjoying the day and living with joy. Having cancer is more like hiking a difficult path and still appreciating the beauty of the surrounding and love of friends, and having fun.