When we think of survivor’s guilt, we often imagine specific, obviously traumatic scenarios. We think about the soldier who feels tormented because he lost friends he served with in war. We envision people who have lived through devastating natural disasters. But other groups of people live with survivor’s guilt, too. In fact, it is quite common among people who have survived potentially terminal illnesses, such cancer. Survivor’s guilt seems to be particularly prevalent among people who have survived pancreatic cancer, perhaps due to the very low overall survival rate.
On the surface, this may not make sense to people who have not lived through it. Why would someone who survived a highly lethal illness feel guilty about living? It would seem that they should be only happy and grateful to be alive. Yet frequently pancreatic cancer survivors feel a combination of gratitude, happiness and feelings of guilt for having lived through what many people perceive to be a death sentence.
As I have gotten to know other pancreatic cancer survivors, I have found that survivor’s guilt is a common phenomenon. Because pancreatic cancer is such a lethal illness, just receiving the diagnosis can be a highly traumatizing experience. Certainly not every pancreatic cancer patient lives with survivor’s guilt, but enough do that it is an important issue to address. While patients may feel extremely grateful to be alive, they may also harbor those feelings of guilt every time another patient receives a poor prognosis or passes away.
When I learned that I had pancreatic adenocarcinoma in November 2013, I immediately sought out other patients with the same diagnosis. When I first learned the 5 year survival rate was only 6%, I was shocked. I desperately needed to connect with others who had experienced what I was going through. Since there were no local support groups for my kind of cancer, the best I could manage was to network online to make connections with other patients and survivors. The initial months after my diagnosis were a time of fear of the unknowns of the surgical and treatment process. As the months have passed and I have remained cancer-free, those fears have given way to a sense of relief and also to feelings of guilt. Every time I read or hear about another fellow pancreatic cancer warrior passing away, I mourn the loss while simultaneously wondering why I was spared.
Feelings of guilt can catch pancreatic cancer patients by surprise. They can also vary greatly in intensity. Some people experience only occasional pangs of guilt. Others find that their feelings of guilt to be overwhelming. Survivor’s guilt can prevent some people from fully enjoying their lives. Kelley, a pancreatic cancer survivor, shares, “I started to read other survivor’s stories and hear their cries of pain and suffering. I started to feel awful. I wondered, ‘why me Lord?’ I know I am not to question God’s Will, but it is very difficult not to question. You wonder what your purpose is. You wonder what you should be doing with the precious gift He gave you. You wonder if you are fulfilling His purpose.”
These feelings of “Why am I still alive?” are very common. Denise explains, “I feel bad for other families that I have survived when their loved ones have passed. Sometimes I wish I would have died and allowed all of those others to continue to have a life.” Michelle adds, “The worst part of survivor’s guilt is when someone younger than me dies or when someone with young children at home passes away from this evil disease. It all bothers me, but those are the worst. I do not understand why I won the lottery with life and so many others have not. I just feel blessed that I have this opportunity to see my son and grandkids grow and will cherish every minute.”
The following are some steps to take to help manage feelings of survivor’s guilt.
- Acknowledge the feelings of survivor’s guilt and remind yourself that they are normal.
- Talk about the feelings you are experiencing, whether with friends, a support group or in a therapeutic setting.
- Acknowledge and honor the people who have passed away. I remember the first pancreatic cancer patient I met. His name was Rich and we talked together at chemotherapy. When he died, I was devastated. I honored his memory by writing about him and our conversations at chemotherapy.
- Take positive actions to help others. Many survivors find that they enjoy giving back in some way, whether it be by reaching out to others who are currently engaged in treatments, or by becoming involved in charitable organizations. Giving back serves the purpose of doing something concrete which can give meaning to one’s experience. “I try to raise awareness as much as I can. I speak in public about the disease and advocate for much-needed funding. I am involved as much as I can be,” Kelly explains. Personally, I have found my involvement with Project Purple helps me to make some sense of my own experience with pancreatic cancer. It helps me to feel like I am making a difference for others who have been affected by the illness, as well.
- Practice Gratitude. Remind yourself of the positive factors in your life. Dawn says, “I try to focus more on being thankful for being alive for my children and grandchildren. A nurse who took care of me said ‘God must have a plan for you because no one thought you would live’.”
- Celebrate your survival. Find enjoyable ways to commemorate the major cancer anniversaries.
- Alleviate stress by practicing good self-care. Get adequate sleep. Eat a healthful diet. Engage in whatever exercise is physically tolerable. Pamper yourself when you feel that you need it.
- Nurture your spiritual side. Some people find prayer helpful, while others enjoy meditation or yoga.
- Give yourself permission to be happy and move forward with your life. Clinical Psychologist Dr. Debby Patz Clarke says, “Although it seems like feelings such as grief and guilt can last forever, in fact research has shown that we only feel emotions for approximately 90 seconds. It is the storyline around those emotions that keeps them replaying over and over again in our minds. What if you were to honor the memory of those you lost by focusing on and maximizing your own strengths rather than wasting your gift of life creating stories about others who better deserved to live? Do what brings you joy, spend time with people you love and send gratitude to those you lost for empowering you to do so.”
While not every pancreatic cancer survivor experiences survivor’s guilt, remember that if you do, it is a completely normal and common response to having been through a traumatic experience. Feelings of guilt can come as a complete surprise to a pancreatic cancer survivor. Those feelings do not need to be debilitating, though. By acknowledging that it exists and by taking active steps to deal with it, survivors can work through the trauma and go on to live happy and fulfilling lives.
