In her 1978 book, "Illness as Metaphor," Susan Sontag argued that societal myths and metaphors surrounding disease can kill. How? By instilling shame and guilt in the sick. Sontag was the first writer to point out the basically accusatory tone of the metaphors we use to describe illness and its causes, as well as the essence of its cure. Examples she cited included tuberculosis, which was once popularly thought of as an illness that afflicted only individuals with delicate temperaments. Because they were supposedly constitutionally weak, these individuals were prone to wasting away. Accordingly, the "cure" for tuberculosis involved "rest" -- a prolonged stay in a sanatorium.
Sontag applied the same reasoning to debunk what she thought were myths surrounding cancer: It is not a curse or punishment, she argued. Our personality does not make us more or less likely to get cancer, and its successful treatment is not essentially a matter of our outlook. We do not get cancer because we are angry, or because we are lacking in some spiritual quality. To quote Sontag, "Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about a disease." That was true for tuberculosis in the 20th century, and it is true today for cancer. Despite that truth, some cancer patients -- and in particular those who have been diagnosed with metastatic breast cancer that has spread to other organs -- continue to experience what amounts to a societal stigma. Consider the following correspondence between me and Ellen, who has metastatic breast cancer:
At the time I was diagnosed as metastatic, I was a six-year volunteer for a local breast cancer group. I ran a support group for the newly diagnosed. I turned to this organization, and was told that they do not allow metastatic patients to run support groups, as it would cause fear among the other "survivors." That was my first introduction to the isolation of having metastatic breast cancer.
Living with this isolation, all my old demons regarding breast cancer came to the surface. What did I do wrong? Was it my diet? Did I not exercise enough? Am I not cheerful enough? Is it because I have some evil thoughts in my head? What did I do to cause this? I mentally tortured myself for several years. I listened to the "survivors" who proudly proclaimed they beat the cancer because the fought hard, then tortured myself wondering if I hadn't fought hard enough. I thought I fought hard. I did my treatments, ate right and exercised. Wasn't that "fighting hard"? Should I have done more? I'd also heard "survivors" say that they beat the cancer because they had so many happy thoughts in their head that there was no room for cancer cells. Again, I blamed myself for not always being happy.
Cancer is neither caused nor cured by our personality. Cancer simply happens to people. In an enlightening book on the subject titled "The Emperor of All Maladies," Siddhartha Mukherjee correctly points out that cancer -- even a specific cancer, such as breast cancer -- is not a single or a simple disease. Instead, Dr. Mukherjee suggests that research is leading more and more to the conclusion that cancer is a dynamic disease that has the power to transform itself and emerge in new forms. Given that reality, wouldn't it be better to talk of "remission" rather than "cure"? And does that reality not have some implications for the word "survivor"? After much dialogue with women who are part of the Metastatic Breast Cancer Network, I have come to think of my own wife, who was diagnosed and treated for breast cancer six years ago, as "a survivor so far." And I have come to appreciate the fact that, no matter how much time may pass, she will always be vigilant about her health. To use her words, "I've lost some confidence in my body. I didn't used to think about it much at all, but now I'm aware of it and any changes in it, day to day."
While personality is not the cause of cancer, or the source of its cure, it is nevertheless true that our outlook can effect the quality of our lives following a diagnosis, as well as the lives of those who love us. Despite her caution my wife remains an upbeat, self-confident woman. She has not let uncertainty stop her from planning our family vacations three years into the future. Ellen put it this way:
Some days are awful, and nothing in my vast supply of medications can do anything to help, and I just sleep most of the day, but there are also many days when I am out doing and enjoying life. Yes, enjoying life! And I feel huge gratitude in my heart for these days, and huge gratitude always to my oncologist and chemo nurses. I have been living with metastatic breast cancer for eight-plus years and know that I am fortunate. I have seen so very many die in the first two years. But then there are those who get into the double-digit numbers. So there is a possibility for all of us. For me, hope means believing in the possibilities -- not the probabilities.
Women with metastatic breast cancer would of course love a cure. However, many would happily settle for treatments that would control it, slow it or prevent its spread. Unfortunately, the lion's share of funding for cancer research goes to diagnosis, prevention and early treatment. Women with metastatic breast cancer -- over 150,000 of them -- are more or less left behind. Working with their oncologists they find themselves relegated to a hit-or-miss approach. For most this lasts two years or less; for others, like Ellen, it can mean that life goes on for quite a while.
So perhaps the truth about breast cancer is that it is a cunning disease that defies cure, but which can be arrested or slowed. And perhaps the warrior metaphors we use to describe those whose cancer has been arrested are better replaced with images of possibility and tenacity. Ellen herself speaks about possibility, yet to read her account of her years-long struggle to contain her disease reflects nothing if does not reflect tenacity. But her cancer was not caused by something lacking in her, spiritually or psychologically.
My colleague Dr. Barbara Okun and I invite women with metastatic cancer to share their thoughts at www.NewGrief.com. It is time for this large and growing population have its voice heard.