Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Moving past myriad rationales for cancer guilt.
There were no pink ribbon lapel pins when I was diagnosed with breast cancer in 1986 at the age of 37. No one rushed up to offer their experience to help me cope. In fact, the one person who did approach me at church was an elderly lady who whispered, “I had the operation too.”
“You mean a mastectomy,” I said loudly. “I had a mastectomy.”
Friends treated me with concern at the unfairness of it all, asking how they could help, and strangely, why I thought I got breast cancer. What did I do, they wanted to know. That question hurt.
I know now they were trying to distinguish themselves from me for emotional safety. If they could say I got cancer because of something I did—knowingly or unknowingly—then they could breathe a sigh of relief because they hadn’t done that.
It’s hard not to blame yourself when you’re treated like someone with a communicable disease. And cancer was new to my family. I was the first. It was also the height of the “me” generation when self-improvement was huge and there was constant press about what was bad for you. At the time, a high-fat diet was the latest cause of cancer in the popular press (an idea that has been so back and forth, it could be a self-propelled yo-yo).
So, I beat myself up about all kinds of things—my diet, my weight, French fries. But then logic took over. My diet, like that of everyone else I knew, could use a makeover. I had indulged in some very age-appropriate eating habits during my college years and late 20s. But come on! If fried food caused cancer, the Centers for Disease Control would be researching East Texas, where the word fried comes before most of the food groups. Now it was getting laughable. Sometimes, we just don’t know why we get cancer, but somehow everyone thinks they know, and they want us to wear those labels so it will be easy to see.
Labels lead to guilt, which can be a huge burden for newly diagnosed patients because it lurks around almost every turn. We feel guilt about causing our cancer, about having our families go through it, about not being able to do what we did before, if only for a short time. Then there are the financial burdens, and the list goes on. Particular guilt comes with behaviors linked to cancer: smoking, sun overexposure, a common sexually transmitted disease and obesity.
It’s not unusual to try and find an answer to why cancer occurs, says Kymberley Bennett, PhD, assistant professor of psychology at Indiana State University in Terre Haute. “With any stressor, and cancer is a big stressor, we try to figure out why it happened to us,” she says. “Ultimately, we want to try to identify something that we can, in turn, control.”
And stressing about the cause of cancer can lead to additional stress, says Dr. Bennett, who recently led a study of 115 women newly diagnosed with breast cancer that showed that those who blamed themselves for their cancer showed higher levels of distress than those who didn’t. The findings also suggested that self-blame negatively affected a patient’s ability to psychologically adjust throughout the year following diagnosis.
Leann Rogers, LMSW, executive director of Gilda’s Club North Texas, says self-blame comes up a lot in discussions with new members of the Dallas support community. Despite evidence that what people do can impact health, Rogers says it doesn’t do any good to look back. “That kind of guilt becomes a huge burden, and if people can’t find a way to work through that and move forward instead of looking back, it can be a big issue.”
For those who smoked or sunbathed excessively, Rogers says it’s hard to face the cause and effect, but people do have the capability to stop blaming and judging themselves. “It’s all about going forward. Not being stuck in the past. You cannot change the past. Once a person gets that and gets on their feet, they can move forward.”
When Joyce Conroy of Milwaukie, Oregon, was diagnosed with skin cancer in 2002, she found herself turning inward. “I isolated myself from everybody because I didn’t want to answer a bunch of questions about how I was doing,” she says. In addition, friends were making comments like, “I guess all that time in the sun finally caught up with you, Joyce.”
In this society, we're very quick to place blame. Part of the reason is that we want to think of ourselves as immune.
Rachel Sanborn, MD, an oncologist at Oregon Health & Science University in Portland, says patients with guilt “see this as their cross to bear, which is a barrier to their getting optimal healthcare.” They may feel guilty for using hospital resources or for asking a family member to take off work to take them to their treatment, she says. Like Conroy, they may not seek social support.
In a recent study of 45 people with lung cancer, most reported feeling stigmatized, whether they smoked, never smoked or quit smoking years before their diagnosis. Some patients even concealed their illness to avoid the stigma attached to lung cancer and smoking. “In this society, we’re very quick to place blame,” says Dr. Sanborn. “Part of the reason is that we want to think of ourselves as immune.”
Rogers attributes it to our culture, which denies illness and has misconceptions about cancer. Patients, she says, may feel guilt because they can’t work through chemotherapy or be the same productive person they were before treatment. “We also live in a death-denying culture. So anyone who perceives that death will be the outcome doesn’t want that—they want everything in a pretty package and for things to get back to normal.”
Rogers encourages Gilda’s Club members to work through the guilt before it becomes depression, anger or even rage. “Guilt, like the other negative emotions, is meant to be a guidepost and should teach us something about the present. These emotions are not meant to stick around.” But mostly, Rogers says, guilt is a barrier to living your life fully.
Cancer survivor Alastair Cunningham, PhD, researches psychological well-being in cancer patients at the Ontario Cancer Institute in Toronto. He says people can benefit from addressing what’s behind the guilt. “You feel illogically that you are less of a person, less worthy than if you were well. Try to shatter those notions,” he says.
“Counseling helps,” says Dr. Sanborn, who recommends working through guilt with a social worker or counselor. Other options may include writing about feelings.
Rogers says there needs to be a therapeutic setting for working on these issues. “Once a person stops looking back and stops questioning everything that happened up to the cancer diagnosis, they can embrace the fact that they are the same person and have a right to exist in the world. Support groups are the great place to do that because they are listening to other survivors who have worked through the same issues.”
I have decided humor is a good way to deal with my guilt. So now when people ask me why I got breast cancer, this is what I tell them: Since I am a college professor, I consider not returning books to the library a real sin. So I got cancer because of the book of William Blake’s poetry that I checked out of the University of Texas library in 1969 and kept on purpose.
It makes as much sense as any of the other reasons people were offering me. By the way, if you’re the librarian looking for that book, I did pay for it.