Survivor guilt

Sandra Bollen-Hughes uses Shrek’s analogy of being like an onion and having layers to explain survivor guilt in cancer survivors.

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A favourite scene of mine is when the lovable ogre, Shrek, declares that there is a lot more to ogres than people think. He goes on to explain that ogres are like onions: they have layers.

To me, we’re all like onions in our emotional life. If studying psychology taught me anything, it’s that human emotions are incredibly complex. Down the years, very bright people have spent large quantities of time and money attempting to make sense of human thoughts, feelings, actions, and reactions. The complexity is bemusing.

Emotional intelligence

Of late, it has become clear through the concept of emotional intelligence that we all need to understand our feelings a lot more than we do. This is because feelings are so important but so confusing. This can take some mindfulness and work.

In sessions, I often spend time explaining how anger is a cover emotion that hides other emotions. Feelings can be mixed or even arise in an opposite form, such as feeling love or gratitude towards an abuser. There is always room to understand yourself more by unpacking your feelings and having a good look at them from time to time. Taking off a layer to look more closely at the next layer of the proverbial onion can have many benefits.

One of the most complex emotions experienced by cancer survivors is that of survivor guilt. Instead of the expected feelings of relief and gratitude for having successfully reached cancer remission, many are plagued by some underlying guilt and distress.

A recent study¹ explored the presence of survivor guilt in lung cancer survivors. It was found that 55% of respondents reported forms of survivor guilt. This is a surprisingly high number. We can’t extrapolate this percentage to other groups, but it certainly indicates that survivor guilt is a psychosocial challenge that should be taken seriously.

Anatomy of survivor guilt

Survivor guilt in cancer patients is the feeling of guilt associated with having survived cancer when others have not. This guilt can elicit feelings of being unworthy of having survived, or distress because others don’t have the same access to treatment.

Cancer survivors may feel upset when comparing themselves to others and feeling that others had more need to survive. This may be associated with feeling negative about themselves and their place in society as they grieve the loss of those they have met or heard about in their own cancer journey.

Survivor guilt may be associated with a wide range of complex feelings, including depression, grief, loss of control, helplessness, sense of injustice, numbing, anger, worthlessness, and even suicidal thoughts.

Peeling the onion and soothing the soul

There is a great deal of advice online about what you can do to ease survivor guilt. In looking at the information, I put the advice into two categories: Peeling the onion and Soothing the soul.

In Peeling the onion, the advice is to recognise that your feelings of guilt, and all that goes with that, is more common than you think. You should try to face those uncomfortable feelings more head-on and identify for yourself what you need to address more fully in your life. This may be to accept the vagaries of life, find more purpose in your journey with cancer, work towards dreams, volunteer, or pay the love you received forward to others.

In Soothing the soul, the advice revolves around continuing to show care for yourself. This includes a focus on health and fitness, joining a support group, getting counselling, or finding a creative outlet.

Ultimately survivor guilt can either cause you to shut down (static guilt) or drive you forward (animated guilt). You get to decide if you will allow your feelings to fuel you into positive action.

Reference

Perloff, T; Shen, M.J.; King, J.C.; Ostroff, J.S. (2019) Journal of Psychosocial Oncology; Survivor Guilt: The Secret Burden of Lung Cancer Survivorship; Sept-Oct; 37(5); 573-585. (Published online).

MEET THE EXPERT – Sandra Bollen-Hughes

Sandra Bollen-Hughes is a counselling psychologist. In 2015 she was diagnosed with breast cancer and realised the great burden of stress that cancer places on patients and so she developed an interest in cancer counselling. She went on to study cancer counselling to gather insight into the field of psycho-oncology. She runs a practice both for general and cancer counselling.