“Guilt is to the spirit what pain is to the body.”
While there is growing attention paid to our experiences as cancer survivors, there is little acknowledgment of survivor’s guilt. It is neither well understood nor adequately discussed. Survivors who express feelings of guilt often find that our feelings are either minimized or dismissed. Well-meaning listeners often counsel that we “shouldn’t feel that way,” a response that tells survivors we are better off keeping our feelings to ourselves.
Survivor guilt is very real, and, on closer analysis, we see that surviving cancer offers very fertile conditions for feelings of guilt. Survivor’s guilt is defined as deep guilt “experienced by those who have survived a catastrophe that took the lives of many others.” As a result, survivors may feel that we did not do enough to save the others. We may then feel unworthy relative to those who died. Although this is the dictionary version of survivor’s guilt, those of us who experience it know that survivor’s guilt manifests itself in various ways throughout our lives and journeys.
One of the biggest misconceptions is the spectrum of emotions that fit under the label of survivor’s guilt. Survivor’s guilt is often understood to be a very specific emotional response to the specific act of out-surviving others. In reality, cancer survivors experience guilt for reasons that extend far beyond simply surviving cancer when others have not. Cancer survivors can experience guilt in a variety of ways:
Loss of a fellow cancer survivor is the most discussed type of survivor’s guilt we cancer survivors experience. Many of us eventually experience the loss of a friend or acquaintance who succumbs to the disease that we are surviving. My first experience with this was the loss of a friend and fellow mother with children the same age as mine and in class with my children. At the last stage of her life, I was there as she mustered up the energy to attend the class parties, field trips, and school activities. Now as I attend our school functions, there is a constant pang in my heart that we refer to as guilt, knowing that she is not there to share in those moments with her children.
News of recurrence in a fellow survivor can create feelings of guilt for cancer survivors with NED (no evidence of disease).
Having a diagnosis at an earlier stage than our peers and not having to undergo as much treatment is a very common type of survivor’s guilt. This kind of guilt can deter early-stage survivors from seeking out support in groups. They may feel they do not have the “right” to “complain” about their own situation since they have it “easier” than others.
Having an easier time with treatment or experiencing fewer side effects from treatment than our fellow survivors can also be a source of guilt for some, even with the same stage diagnosis as their peers. This can be especially difficult for those who have befriended another survivor during their treatment or are mentoring a survivor on their journey.
Passing on our genes to our children can be an extreme form of guilt for those of us who learn we have an inherited genetic mutation that may have led to our cancer. Although knowledge is power, knowledge of a genetic mutation that raises the risk can cause stress for our family members and cause us to feel tremendous guilt.
Impacting the lives of others during treatment and thereafter is another form of guilt that can show up in many facets of a survivor’s life. Whether it is the burden of our care, missed time from work, or the financial strain that our cancer has caused on the family, it can all weigh heavily on a cancer survivor’s shoulders. Our personal changes can also have an impact on others—our change in attitude, our perspective, or even our sexuality can play an enormous role in our relationships. After his battle with prostate cancer, Will Grant said, “My guilt comes in the form of my sexuality or better stated, in the loss of my sexuality as defined by our culture. I felt I was no longer able to be the sexual partner my beloved wife and soul mate deserved.”
Not doing cancer “well” was a form of guilt I had not considered until attending a talk by psychotherapist Julie Larson, LCSW. Survivors who struggle to maintain a “positive” attitude or who aren’t handling their diagnosis the way they think they “should” may judge themselves harshly and experience guilt over what they perceive to be their failures.
Not being enough of a survivor may be a struggle for those who just want to get back to their own life. These survivors may be feeling pressure to wear their cancer ribbon, fundraise, advocate, and so on, when what they really want is to just put it all behind them.
Not having a life-changing experience relates to the 2 types of guilt discussed above. Survivors may experience guilt over not having a spiritual epiphany, or not feeling as if cancer was the best thing that ever happened because it “woke me up” to life. Survivors might feel guilty for not transforming into more health-minded, enlightened, cancer-fighting gurus.
Feeling a lifelong responsibility to be there for those who were there for them can be a daunting form of guilt for those who experience it. This is especially difficult as we learn about hardships our former supporters face. Tiffany Gould said she felt guilt when she learned that her friend had passed from cancer after 6 months in remission. “I cried for days because I felt so terrible that I had no idea she was fighting for her life again and I wasn’t there for her like she was for me. I felt like I should have somehow KNOWN and should have been there to DO something.”
Although I have listed several forms of survivor’s guilt, these are just the most common. With such a broad spectrum of emotions categorized under the one label, Larson advises that redefining survivor’s guilt as specific emotions can help us to cope and more fully heal. Larson explains that survivor’s guilt can most often be decoded as empathy, sadness, anger, grief, anxiety, pressure, or posttraumatic stress disorder (PTSD), an anxiety disorder associated with serious traumatic events. Our first step in addressing survivor’s guilt is to identify the emotion we are dealing with so that we can then take steps to process those feelings. The following are some self-care tips for addressing specific emotions associated with survivor’s guilt:
Empathy as experienced by cancer survivors is a new and heightened sensitivity toward others and their struggles. As an advocate, I know how heavily empathy can weigh on us. We recognize and respond to another’s pain in relation to our own experience. As we empathize with another, we sometimes experience a confusion of emotions that span from sadness for another, to relief, gratitude, and hope for ourselves.
Sadness is an emotion that needs to be felt in order to release it. Find the people, places, and comforts that allow you to feel safe enough to feel your sadness. Larson highly recommends “shower therapy,” saying that many find the shower a safe and soothing place to release tears. It is equally important to identify thoughts or activities that help to pull you out of your sadness and to turn off your tears, such as doing tasks, listening to upbeat music, taking care of responsibilities, counting your blessings, and so on.
Anger is an energy that needs an action to be expressed. These actions can be done in private or just mentally. Try to identify people in your life that you can vent to and who will listen and respond in a supportive way. It is also important for survivors to learn to identify the triggers for anger.
Grief is a common response to any type of loss. We can neither bypass nor avoid grief. We have to go right through the middle of grief in order to eventually move beyond it. As survivors, we may be experiencing grief if we show such signs as unexpected crying, lack of energy, feelings of uncertainty, changes in sleeping or eating habits, feeling withdrawn or unmotivated, irritability, hyperactivity or fear of slowing down, trouble concentrating, avoidance of others, and fear of being alone. The grieving process is highly individual. There is no prescribed timetable or way of experiencing grief. We must be patient with ourselves as we work through our grief in whatever ways come most natural to us.
Anxiety is a strong feeling that commonly triggers reactions in the body. Anxiety is often caused by what Larson describes as “the dirty little habits of our thoughts.” Making assumptions, over-generalizing, making unfavorable comparisons between ourselves and others, taking things personally, dwelling on the negative and disqualifying the positive, and “catastrophizing” can all be ways in which our thoughts wreak havoc on our mental state. Recognizing when our thoughts are destructive or distorted can help us to stop them when they start and to redirect our thoughts in more constructive ways. Thinking positive, reaffirming thoughts, asking for compliments from others, and surrounding ourselves with people who lift our spirits and encourage us are helpful ways of reducing anxiety.
Pressure is feeling the strong need to give back or pay it forward. It is not uncommon to feel this sort of pressure, and many great things can come from this emotion. Pressure can help survivors to identify the good and find meaning in survival. Larson coaches her clients to:
- Identify your skills and sources of joy in helping others.
- Join in and support a cause or create your own.
- Consider how the emotional impact of giving back will affect you and how you will take care of yourself as a result.
Larson offers these general tips for self-care when dealing with survivor’s guilt:
- Be gentle with yourself and honor your emotions.
- Understand that your feelings will change from day to day.
- Try not to ignore the need to share your worries, fears, and questions.
- Talk with others about your concerns or uncertainties.
- Try not to put on a happy face if you are not feeling happy. Being honest about your feelings is more helpful to everyone.
Knowing that survivor’s guilt is not only real, but it exists in many emotional forms is the first step in overcoming it. Find the people in your life with whom you can express your emotions without feeling dismissed. Find your audience, whether it be good friends with strong listening skills, support groups, or a therapist who can help you to better understand your feelings, accept support, and guide you through your process. As stated by a sister survivor in my Empowering Patients and Survivors focus group, “I don’t feel pressure to be there or that I owe anyone anything. I think surviving, and then thriving, is the best gift I can give.”
Julie Larson, LCSW, can be reached through her website at www.julielarsonlcsw.com.
Angela Long is the founder and creator of Breast Investigators. Breast Investigators serves as a comprehensive resource guide to help those affected by breast cancer readily gain access to quality information, care, assistance, and support. Visit their Facebook page www.Facebook.com/BreastInvestigators.