Monday June 6, 2022
Survivor guilt of some kind is an almost universal experience for individuals affected by retinoblastoma – survivors and siblings of all ages, parents, grandparents, and others. Continuing our four-part series on Survivor Guilt, WE C Hope CEO and Rb Survivor Abby White explores the causes, risk factors, and underlying emotions.
This is the third instalment in our 4-part Survivor Guilt series.
In parts 1 and 2: 7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt, we describe a wide range of experiences, some of which you may relate to.
Part 3: Understanding Survivor Guilt explores causes and risk factors, and the emotions that fuel survivor guilt.
Part 4: 8 ways to heal Survivor Guilt offers practical solutions to move through and beyond these destructive feelings.
Guilt is a very difficult subject for the individual and those who love them. Avoiding thoughts or conversation about it is a natural protection mechanism, but this also prevents release and healing, and stifles research that can improve care. We hope this series will help everyone in our community feel more able to acknowledge and talk about survivor guilt, and find a path to healing.
Some people understand and can articulate that they are experiencing survivor guilt, but many can’t acknowledge it. And too many don’t recognise their thoughts and feelings as survivor guilt at all. Medical professionals, parents, friends, teachers, and therapists need to listen carefully for what is not being said, and be willing to gently ask questions to help understand more.
For example, a parent who says “I shouldn’t be here”, may harbour feelings of guilt about their child having a less complex form of cancer than other children whose families access the service. A sibling who asks “how come my brother lost his eye and I didn’t?” may feel guilty that he survived the same genetic mutation with both eyes saved. A survivor who says she never feels good enough or successful enough may feel guilt for not living a heroic life.
Here are some more examples of statements that may signal survivor guilt:
- If only I had … / What if we had…
- I’m sorry to take up your time. You have so many other patients to look after.
- I wasn’t brave / strong / assertive / creative / positive… like the others.
- How come my child got to keep their eye?
- How did we survive this?
Survivor guilt is recognised as a symptom of Post-Traumatic Stress Disorder (PTSD) by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5, used in the USA), and the World Health Organization’s International Classification of Diseases (ICD-11, used worldwide). PTSD often develops in tandem with survivor guilt, and the combination can be incredibly harmful to emotional wellbeing.
Replaying and dissecting the painful experience can distort thoughts, feelings, beliefs, and perspective. For example, a person may believe they are a failure, burden, or embarrassment, and that they don’t deserve joy, or even life.
PTSD after childhood cancer is particularly complex. If you are experiencing symptoms of PTSD, seeking professional help will be very valuable to help you heal.
All patients and family members affected by childhood cancer can experience survivor guilt, but many do not. While awareness of PTSD in psycho-oncology is growing, there is less study of survivor guilt specifically. However, PTSD research suggests that some people are more at risk to develop survivor guilt than others.
Experiencing previous trauma of any kind, at any time in life, increases a person’s potential to feel intense guilt after surviving another trauma. As does complex trauma such as prolonged retinoblastoma treatment, repeated procedures, and strong awareness of lifelong risks and impacts. Even if the person cannot consciously recall their traumatic experience, its footprint is stored deep within the subconscious memory of body and mind.
Whether they remember the trauma or not, people who experience multiple or ongoing traumas are more likely to feel responsible for the outcomes. Particularly if they believe they caused the traumatic situation, or that they could have done more to prevent it or reduce its impacts.
Depression and anxiety are common during childhood cancer treatment, and may linger for years after. Previous and existing mental health issues, whether diagnosed or not, increase the risk of survivor guilt and Post Traumatic Stress.
Like so much of our emotional and physiological responses to life, survivor guilt may have evolved from the social structure of humanity. Our need to belong, and to protect and grow the community as a whole.
A core element of survivor guilt is the person’s belief that they didn’t do enough, or that they are not enough. These feelings may be more likely in people who fear social interaction, confrontation, or rejection. Or in people who believe their actions in some way deprive or burden the community, and reduce its collective wellbeing. Introversion and low self-esteem may therefore increase risk for survivor guilt.
Support from family and friends during childhood cancer treatment and beyond increases the sense of security and belonging, and reduces risk for survivor guilt and PTSD. Feeling alone, isolated, and unsupported magnifies negative thoughts and feelings as they become trapped within mind and body.
When a person lacks healthy ways to release their emotions, either through conversation with someone who cares, expressive arts, or mindfulness, those feelings can become quickly overwhelming. Thoughts may become distorted as the person focuses heavily on the trauma, and their role in it.
Many people try to avoid, suppress, or block out the thoughts and feelings that arise from trauma. Others submit themselves to their emotions, forming a distorted sense of responsibility that amplifies personal recrimination.
In these circumstances, people are more likely to use addictive behaviours to distract and numb their pain. Such behaviours include excessive drinking, smoking, gambling, use of prescription or illegal drugs, overspending, extreme dieting and exercising, binge-eating, cutting, and other forms of self-harm or risk-taking.
While these distractions may dull emotions for a while, relief is only temporary. Ignored emotions grow stronger, and existing mental health conditions like depression and anxiety may become worse. The avoidant behaviour itself usually also has negative impacts on body, mind, financial security, relationships and more..
Survivor guilt is not a single experience or emotion. It manifests in many ways, fuelled by an array of strong emotions. All survivor guilt arising from childhood cancer is rooted in empathy – the ability to understand and share another person’s feelings. On this cancer journey, we quickly learn to frame other people’s suffering within the arena of our own thoughts, feelings, and experience. We respond to them with greater awareness and compassion.
However, because we bind our perception of other people’s experience so tightly to our own, our thoughts and emotions can become distorted and confused.
To process and heal our own emotions, we must first recognise, understand, and acknowledge them. Naming our flamboyant emotions, taking time to ask what lies beneath them, and listening for the answer, is an important way through survivor guilt.
Anger begins with a trigger – we don’t like what happened, or something we or someone else did or said. We feel a momentary flash of emotional pain in response, and then we’re flooded with anger.
We tell ourselves a story about the event, the people involved, and why we’re angry. Retelling keeps the event fresh in our mind, distorting it away from the reality of what happened, fueling our anger even more. In response, we may do one or more of the following:
- Lash out.
- Fixate on the cause, either loudly complaining or quietly boiling away until pent up emotions erupt.
- Repress the anger, believing it to be an unacceptable emotion.
Anger is a loud emotion that seeks to distract and protect us from more vulnerable thoughts and feelings. Those primary emotions are the momentary flash of pain we feel in response to the trigger. We can identify them by asking ourselves what we were feeling just before anger swept in. For example fear, rejection, irritation, grief, or shame. We can then reframe and diffuse the anger by addressing that underlying need.
Anxiety is an insidious emotion caused by our unruly thoughts around fear and worry. It is most often recognised as physical symptoms such as a pounding heart, rapid breathing, tension headache, dry lips, sweating palms, and tight muscles.
Fear and worry may drive us to make snap judgements, sweeping assumptions, unrealistic expectations, and unreasonable comparisons. We are more likely to dismiss the positives of a situation, focus on the negatives, and conjure worst-case scenarios from past events or future possibilities, to affirm our perspective.
Like anger, these emotions are simply reactions to experience. Trying to resist, ignore or bury them trains the mind to doubt and mistrust its own messages. Recognizing the destructive thoughts that lie beneath can help us reframe the story, and diffuse the anxiety.
Childhood cancer causes many kinds of loss – the loss of childhood innocence, happy family life, financial and emotional security, physical and mental health, future dreams, sight, and life. Grief is an almost universal response, and one must pass right through the pain of it to heal. Grief can manifest as:
- Denial of the loss.
- Intense sadness.
- Being easily tearful.
- Loss of energy and motivation.
- Feeling irritable and over-reactive.
- Hyperactivity or not wanting to be still.
- Inability to stay focused on one task.
- Sleeping and/or eating more or less.
- Withdrawing from family, friends, and society.
- Fear and worry about the future.
There are as many ways to grieve as there are grieving people, because we all experience loss in different ways. There is no right or wrong way, or timescale through grief. The most important thing is that we recognise and make space for grief. Finding safe ways to feel and release grief takes time, self-compassion, and patience.
Shame is a particularly cruel, and often misplaced, emotion. It may arise when we feel joy while people we love and care for are suffering or have died. Our delight in life feels wrong alongside that pain.
We may also feel shame for not living the life of a heroic cancer survivor, for not being or achieving enough, or for unhealthy coping strategies we used in response to our trauma. All situations that can cause a person to feel they are ungrateful for their life and the people who helped to save it.
These terms are often used interchangeably, but they mean different things:
- Stress arises from having too many demands and not enough resources to fulfil them. For example, we may lack the skills, emotional or physical energy, time, money, practical tools, or support network to successfully complete tasks or progress in life.
- Responsibility is a sense of duty, obligation or liability for which someone believes they will be held accountable. This belief may be true or false. For example, we are responsible for our actions, and we may feel responsible for another person’s suffering – even if we didn’t cause their pain.
- Pressure is a perception that something depends on the outcome of your actions. For example, we may feel a strong need to give back to the cancer world, our family and community, or wider society.
When we can’t differentiate between stress, responsibility, and pressure, every stressful situation can feel like high pressure, and the goals and expectations we create can become a heavy responsibility. The confusion can morph into crippling perfectionism and a constant sense of failure, blocking clear thinking, and draining precious energy.
Separating stress, responsibility and pressure can help reduce the strain, and find constructive ways forward. To identify which of these three emotions is driving your survivor guilt in any situation, it can be helpful to ask yourself the following three questions:
- Do I feel overwhelmed by demands I can’t meet? (stress).
- Do I believe I will be held accountable for my actions? (responsibility)
- Do I feel I have to produce a specific outcome? (pressure)
Each response has different solutions. For example:
- Stress: identify tools and sources of support to reduce overwhelm.
- Responsibility: Ask questions of yourself and others to reality-check your beliefs, and reframe the story you are telling yourself as needed.
- Pressure: question whether the situation truly depends on your success and justifies your actions, and relieve the pressure by adjusting your goals and expectations.
The occurrence and experience of survivor guilt varies from person to person. Some never experience survivor guilt, while others can be completely frozen by it. These feelings reflect our empathy for one another, but the absence of survivor guilt does not mean a person lacks compassion for others.
The emotions fuelling survivor guilt can intensify pain and distress; dwelling on them can be very destructive. Acknowledging the many faces of survivor guilt is the first step towards healing.
Allowing and exploring these feelings, developing healthy coping skills, asking for help, and finding peaceful acceptance will together form a pathway through this trauma. In our final instalment of this series, we will explore 8 practical ways to work through and heal from survivor guilt.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.