7 Ways Retinoblastoma Families and Survivors Experience Survivor Guilt – part 2


Monday June 6, 2022


Anyone affected by retinoblastoma can experience survivor guilt – survivors and siblings of all ages, parents, grandparents, partners, and others.  WE C Hope CEO and Rb Survivor Abby White continues to explore the many ways in which family members experience survivor guilt, and the potential impacts during treatment and throughout life.


This is the second 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.


 

A young boy looks out over a stormy sea. Waves crash in and dark clouds gather in the distance. The photo is taken from behind the child.

Introduction

In part 1 of this series, we explored what survivor guilt is, why understanding it matters, and three key ways it affects individuals and families:

  1. Having an “easier” cancer journey than others.
  2. Outliving others.
  3. Inheritance of the RB1 gene mutation.

Below, we explore four more faces of survivor guilt:

  1. Winning the genetics lottery.
  2. Impacts on family.
  3. Impact on friendships.
  4. The hero’s journey.

4. Winning the Genetics Lottery

Survivors of non-heritable retinoblastoma occasionally express feelings of guilt about their personal struggles arising from treatment, specifically because they do not have the lifelong complications of RB1 mutation.  They belittle their own experience with enucleation, their prosthetic eye, other treatments and the cumulative psychological effects of Exams Under Anaesthetic, feeling they should be immune to these physical, mental and emotional impacts because they had the “simplest form” of retinoblastoma.

This kind of guilt is perpetuated by the myth that non-heritable retinoblastoma has no significant long-term effects.  Enucleation, though a short, routine surgery for the ophthalmologist, does have lifelong impacts that can be significant physically and psychologically for some people.  Every child, no matter their diagnosis, will be shaped by their medical experience, procedure supports, and family/community support they did or did not receive.

This kind of survivor guilt is similar to feeling guilty for having an easier cancer journey, with the same consequences.  I highlight it specifically because it is possible this group of survivors is least likely to be identified as needing psychological support during treatment, and throughout life.

The guilt survivors occasionally reference in speaking about their own experiences and concerns suggests they would benefit hugely from greater understanding and support.  Also, we can learn much from their experience to offer effective psychological supports to all children in treatment, and emerging from treatment today.

Yelling: “It shatters and rips my heart when my son yells while I have to hold him down with the nurses and doctors to access his port, dilate his eyes, or give him medicine. He yells more while walking the hospital halls or passing other doors in the clinic. You hear other kids yell ‘no’ and ‘stop it’. They are scared and tired. How much we parents want to yell too...” – Jackie, mother to a 3yr old Rb survivor. Image to the right shows a desaturated picture of a woman placing her head in her hands.

Letter Y from our 2020 Alphabet of Hope – #FamilyInSight, which captured experiences and reflections from family members affected by retinoblastoma.

5. The Impact on Family

Retinoblastoma can profoundly impact family life. 

Parents

Children are very young at diagnosis – parents may be newly experiencing first-time parenthood with the diagnosed child, or caring for infants younger than their child with eye cancer. 

Due to its rarity, treatment and follow-up care often necessitates frequent travel far from home, sometimes separating families for extended periods.  Funds available for education, treats, leisure and experiences that open up a child’s world may be limited by the costs of treatment, travel and related expenses. 

Guilt can quickly form in parents for a host of reasons.  For example:

  • Not being able to prevent the cancer or their child’s suffering.
  • Not knowing about retinoblastoma or its signs and symptoms.
  • Not seeking medical advice when signs such as leukocoria or strabismus were first seen.
  • Being reassured by doctors that the eyes were healthy.
  • Not pushing for further eye exams or second opinion earlier.
  • Delaying treatment for a long time while seeking second opinions.
  • Treatment decisions made, mostly when the child has a less than optimal outcome.
  • Inability to provide for the family or keep everyone together.
  • Psychological burden on both diagnosed child and siblings.
  • Lost connection with their other children.
  • Impact on the parent-parent relationship.
  • Impact on the sibling-sibling relationship.
  • Lost childhood and lifetime opportunity.

Young Children in Treatment or Surveillance Care

Very young children are acutely aware of the world immediately around them.  They do not understand the decisions and sacrifices made to enable their medical care, but they sense the emotional responses in people they love and look to for cues.  As guilt forms in parents, children pick up on the external radiating pain, emotions of grief, anger, worry, resentment, loneliness, fear.

They grow up with an awareness that much of this pain flows from their medical experience, and thus they may develop their own intense guilt very early for causing their family’s suffering.  his guilt may cause them to hide their pain, sadness or even physical symptoms from their parents and other loved ones, in attempts to protect them.

Parents often become aware of this but don’t know how to help their child, increasing their own guilt and pain.

Older Child and Adult Survivors

Survivors are more likely to feel chronic guilt when they are affected by significant treatment late effects, and/or risk for, or diagnosis of, second cancers.  Guilt can stem from the worries family members carry, and the sacrifices made.  Medical care, vision services, RB1 mutation impacts and risks etc. are routinely prioritized over other interests and dreams – choice of home location, job and career, family planning, financial decisions and more.

Guilt also evolves as survivors and those around us try to navigate the constant sea of emotions.  The sense of responsibility can sit heavy on heart and mind – for both the survivor and their loved ones.

Siblings

Siblings can experience guilt early on around not being able to help prevent or east their brother or sister’s suffering.  Young children have an egocentric view of life – the world revolves around them.  They also process their experiences through the filter of magical thinking.  Because of this, they often believe they caused the cancer by thinking or saying unkind words, by hitting their sibling, causing them to cry, being angry, or some other benign interaction.

Siblings are often intensely jealous of the gifts, treats and constant focus on their brother or sister, particularly when the diagnosed child appears to be well.  They may feel guilty about their (natural) resentment and anger, or for coveting the gifts and attention lavished on the diagnosed child.

Some children may wish they had cancer in addition to, or instead of their sibling, so they too could receive the gifts and attention.  They may complain of headache or tummy ache, or “act out” in attempts to gain attention.

As siblings grow older, and their understanding of cancer evolves, the memory of their jealousy and attempts to gain attention may morph into feelings of guilt about their thoughts and actions, and not being more supportive through such a challenging time.

6. The Impact on Friendships

Friendships forged through retinoblastoma are rare and precious.  Whether parent-parent, survivor-survivor, sibling-sibling, parent-survivor, peers or across generations, bonds are strengthened through shared experience, understanding and care, and last a lifetime.

But the lifelong retinoblastoma journey has countless twists and turns for survivors and their family – stress and anxiety ebbs and flows along with the each new challenge.  This fluctuating stress can cause friction, especially when both friends hide the extent of their challenges from one another.  Perhaps to maintain privacy, because they feel unable to discuss the subject, and/or to protect the other.

When both friends are experiencing intense challenge, one or both may step back from close communication to reduce their individual stress.  However, without good conversation beforehand, this can lead to misunderstandings, unkind words, and guilt on both sides. 

From a distance, these friends still think of one another very much.  Intense guilt bubbles around their inability to be present for a person they care about so deeply who has been with them through more than most people experience in a lifetime.  This guilt can be more destructive if one friend develops serious health complications or dies without the other being aware of the change in circumstances (an increasing occurrence as we connect globally through social media).  Or when the remaining survivor feels they did not do enough to address concerns about their friend, or support them and their family in that time of greatest need.

Five creamy white tea light candles in cut crystal candle holders cast a warm glow in the darkness. The central candle holder is shaped like a lotus flower. Tiny points of colour at the base of each petal create a subtle rainbow effect throughout the glass that is very faintly reflected in the glass of the other candle holders, and in the light cast on the wood surface where they rest.

Candles lit on Cancer Survivors Day 2021 for friends lost to second cancers and their effects, for friends in the fight for their lives, and for all of us who live with this risk every day.

7. Not living the Hero’s Journey

Many people are positively transformed by their cancer experience.  They emerge from the trauma with deeper self-awareness, understanding of their inner strength, appreciation for life and relationships, and motivation to pursue new possibilities.  This experience is called Post-Traumatic Growth (PTG), and is a hugely powerful force in a healthy life beyond retinoblastoma. 

However, not everyone experiences PTG.  Society’s expectation of cancer survivors to overcome and live the hero’s journey may itself be a barrier to healing and growth.

Pressure to be Perfect

Many survivors feel high pressure to be and do more than their peers, and that whatever they do must be the best.  This could be because influential people in their lives (their parents, extended family, teachers, medical professionals, friends etc.) have unreasonably high, or low expectations – or they believe this to be so, and/or because they have not received appropriate vision services or trauma recovery care.

Sight loss combined with cancer survivorship can lead to destructive perfectionism as the individual strives to prove themselves a capable, independent, valuable citizen whose life was worth saving.  Many are navigating ongoing sight and healthcare challenges, and feel a greater need to suppress the dark sides of that experience, so their heroic life is accentuated.  Guilt can take root when the survivor feels unable to fulfil their own expectations, or other people’s.

Huge guilt can also arise in survivors who struggle with their visual disability and cancer history.  Some perceive themselves to be inadequate because they are processing their experience more slowly than others, because they need more help to do everyday tasks, because they are unable to find a job, or pursue the kind of career or specific job they wish they could do.  Poor access to vision technologies, resources, supports, legal protections, and social and cultural awareness limits the survivor’s ability to be fully included in society.  All these things impact the burden of unjustified guilt we carry.

Some survivors (and their relatives) feel guilty for not becoming super healthy, and for not dedicating their life to fighting cancer.  This guilt can be especially fierce when their parents are, or have been, highly health conscious or active cancer advocates – they feel more intensely that they are letting their loved ones down, or not showing gratitude. 

Early Childhood Trauma

Being known as the child who had cancer from the start of their life can be tough for survivors, especially when their parents have been active in the cancer advocacy or fundraising world.  Much emphasis is placed on the life-changing experience emerging from the survivor’s cancer narrative – we are always impressed and reassured when survivors reshape their nightmare into a story of hope and resilience. 

Retinoblastoma survivors rarely have that deep perspective as they had no life experience before cancer, or retain no memory of it.  They have nothing to compare – life with cancer, or as a survivor, is all they have known.  However, many feel an acute awareness within their body and mind that they experienced something significant, and potentially traumatic.  Being unable to release the shadow of that experience can itself cause lingering guilt.

When young children grow up with psychological effects of trauma, stress and anxiety can manifest in negative ways, such as delayed development, defiant, destructive, and/or risk-taking behaviours, attention-seeking, or withdrawal from social interactions.  These experiences are magnified and prolonged when the child or adult survivor is unable to identify, understand and articulate the root of their distress, and the family and/or health professionals are unaware of, or do not recognise, post-traumatic stress,

Guilt is often carried throughout life, even after the puzzle pieces of that complex trauma history have begun to fit together.  Survivors who are affected in this way feel guilty about their actions or inactions, and the damage their behaviours caused, about the additional strain placed on parents and siblings, and about failing to live the life of a heroic childhood cancer survivor.  Parents feel guilty about not recognizing or understanding their child’s trauma, and not knowing how to help.  By the time healing begins, relationships may be mutilated beyond repair.

How Do We Heal Survivor Guilt?

Some people understand and acknowledge that they are experiencing survivor guilt, but often don’t know what to do with their feelings.  Too many cannot recognize their thoughts and feelings as survivor guilt at all.

There are many things we can do to change this, to gently investigate our own emotions and those of the people we love, to understand guilt more, and to release ourselves from its destructive hold.

As individuals, families, and community, we can begin healing the tremendous burden we carry.  Healing begins with understanding.

Read part 3 of this series, in which we explore how to recognize survivor guilt, including its causes, risk factors, and underlying emotions.

an anchor tethers a bright red hot air balloon floating in a grey sky.

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.

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