Monday June 6, 2022
Anyone affected by retinoblastoma can experience survivor guilt – child and adult survivors, siblings, parents, grandparents, and others. WE C Hope CEO and Rb Survivor Abby White concludes this four-part series on Survivor Guilt with 8 practical suggestions to help acknowledge, move through, and heal from the destructive emotions that fuel survivor guilt.
This is the fourth and final instalment in our 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.
The emotions of survivor guilt can be very destructive. Developing healthy ways to explore, express and release them is vital. It is also important to identify constructive thoughts and activities that help to positively refocus our energy. We can do much to ease the distress and move forward well.
We are quick to support family and friends in a crisis with words of comfort, encouragement, and affirmation, and practical acts to care for their wellbeing, but too often we are reluctant to give ourselves the same support when we most need it.
Listening to ourselves requires compassion, care and love, which can be hard to muster in tough times. Particularly when our sense of self-worth is low. Telling ourselves negative stories is easy. Becoming our compassionate, caring, loving, best friend takes time and attention, but it’s so vital to our wellbeing.
How can you become your own best friend? Imagine your dearest friend is in your situation, struggling with the same feelings that overwhelm you. What would you say or do to comfort and support them? What would you wish for them? What advice would you like to give?
Answering these questions will help you identify how to be your own best friend; how to treat yourself with more self-compassion, self-care, and self-love. All three are connected, with key differences. Learn why they matter so much, and how we can cultivate them.
The heart and soul has a deep need to be heard, but how often do we truly listen to ourselves? The first vital step in coping with and healing from survivor guilt is to recognise and acknowledge our thoughts and feelings.
Honest self-enquiry helps us understand and cope with challenging thoughts and strong emotions like anger, fear and worry. Daily practice strengthens our ability to recognise, understand, and trust our thoughts, feelings, and intuition, edit the negative stories and falsehoods we tell ourselves, and attend to our needs.
Journaling can help us process and release complex emotional distress. In her book The Artist’s Way, Julia Cameron encourages readers to begin every day with “Morning Pages”, which she describes as:
“Three pages of longhand, stream of consciousness writing, done first thing in the morning. There is no wrong way to do Morning Pages – they are not high art. They are not even ‘writing.’ They are about anything and everything that crosses your mind – and they are for your eyes only. Morning Pages provoke, clarify, comfort, cajole, prioritize and synchronize the day at hand.”
For 5-15 minutes at the start of the day, you’re fully focused on liberating your mind. The journal becomes your pensive, your pen or keyboard and act of writing is the magic that draws the silver stands of mental clutter from your mind.
Set your day off to a calmer, lighter start with this easy journaling exercise. If 15 minutes seems daunting, try writing for just 3 minutes. You also don’t have to write at all. Simply open your preferred notes app on a smartphone or tablet to speak your thoughts and feelings. On both iPhone and android, the Dictate button is located to the left of the Space button on any on-screen keyboard, represented by a microphone icon.
3. Make Space for Grief
As we juggle busy lives, daily commitments, and the practical implications of retinoblastoma, our grief is very often ignored, or not recognized at all. Suppressing the grief that arises from retinoblastoma can be very harmful, with potentially lifelong impacts. Families, survivors, and medical professionals need to know how to make space for grief, to prevent this suffering.
We all grieve differently. Acknowledge your need to grieve, and allow yourself the comfort to grieve in your own way and time. Try not to hide your feelings behind a fake smile. Those who love us cannot do anything with pretended peace, but they and we can do much with honest rage, sorrow, and other turbulent grief emotions.
Stress amplifies all negative emotions, and reduces our ability to cope with them. Learning how to manage stress, and finding healthful ways to release physical and emotional tension is vital. For example:
- Spending time in nature.
- Doing individual or group sports.
- Participating in faith-based activities.
- Practicing yoga, meditation, or mindfulness.
- Listening to uplifting music, or reading a book.
- Creative pursuits like music, baking, knitting, or writing.
Shower therapy can also relieve stress – allowing tears to flow with the water helps release tension, calming both body and mind. Some people find release as they imagine their emotional burdens washing away with the water.
Mindfulness brings our focus intensely to the present moment, without judgement. The techniques help to quiet painful emotions and negative self-talk, while affirming the beauty and potential in life. Examples include:
- Deep breathing.
- Guided meditation or a body scan.
- Handcraft activities like cross-stich, colouring, painting, or sculpting.
- Shaking a calming jar and watching the glitter dance, sparkle, and settle.
- Taking a sensory walk (focus on what you can see, hear, feel, smell, and taste).
Read More: 45 ways to reduce your stress
5. Establish Your Support Network
A confidante who holds space for us is a real balm. A friend, relative, or professional can listen and support as we explore our feelings, identify their roots, and find ways to let them go. They can lift spirits, nurture self-esteem, and help us find a path to healing.
Support groups, online or in-person, may be very valuable. Talking with people who have similar experiences allows us to explore difficult feelings together, rather than in crippling isolation. As we share our feelings more openly, we can break down the shame and stigma that surrounds survivor guilt, and encourage others in the community to find healing together.
Who can be your listening ear, compassionate witness, and wise counsel on this journey through survivor guilt? Tell them what you need, and ask for their support. Most people want to help, but don’t know what to do or say – asking is the first big step.
6. Aim for Acceptance
Most of us want to understand the experience of retinoblastoma, its impacts, and outcomes. Explanations create a sense of security in confusing, overwhelming times, even when they involve self-inflicted blame and guilt. But often there are no clear answers, and in order to move on, we must acknowledge this reality.
Reconciling ourselves with this truth can be extremely hard. The path to acceptance demands that we process and accept the traumatic experience as it is, along with all its consequences. For many of us, that includes profound personal loss, ongoing risks, and deep emotions.
Taking time to fully explore our feelings can light the way to acceptance and peace. Understanding that we did not cause the traumatic experience, could not change the outcomes, and should not blame or punish ourselves for it.
Letter C from our 2011 Alphabet of Hope, which shared tips for #MindAndBody wellbeing during retinoblastoma care and beyond.
7. Ask for Professional Help
Retinoblastoma has potentially lifelong impacts. For many of us, coping with, and healing from these impacts, survivor guilt is an ongoing process that can be difficult to navigate alone. Talking with a counsellor, psychologist, or other mental health professional is valuable for many. Talking therapies can help you:
- Explore the feelings that drive your survivor guilt.
- Assess and reframe negative thoughts and self-talk.
- Work through anxiety, depression, and PTSD.
- Identify and establish healthy coping skills for daily life and triggering situations.
Individuals with low self-worth may feel unable to seek professional help, believing they don’t deserve it, or that they will be wasting the professional’s time. Too many people struggle to access affordable therapy, or a safe space where they can share their pain without judgement, or fear of judgement.
Please talk about your concerns with your retinoblastoma care team, primary care provider, or online therapy programs. They can help identify and connect you with a professional who is experienced in PTSD and/or survivor guilt.
8. Embrace Life
Life is for living, especially amidst the trauma, loss, and uncertainty of retinoblastoma. Even as we place our knees on the ground to pray for our own relief, or those we love in their suffering, we can also celebrate this moment, and the potential life still holds for us.
None of us – survivor or relative – has to prove ourselves worthy or deserving of survivorship. We don’t have to be wildly successful, socially involved with lots of friends, or pursuing many activities. And we certainly don’t have to raise awareness or funds, or create a charity, to justify our place in the world.
What do you truly want from this moment, this day, this life? Don’t build your life on a sense of obligation, or your perception of what others want/expect from you. Choose the goals, make the plans, and take the actions that feel right for you. Live YOUR life, not someone else’s. This activity may help you identify your ideal hobbies, career, mission, and purpose in life.
The role of PTSD in the cancer experience is increasingly studied in both paediatric and adult oncology, and the subject is often discussed among survivors and parents. However, little is known about PTSD and survivor guilt in its many guises among different family members affected by retinoblastoma.
A growing number of survivors and their families worldwide are grappling with these experiences, and the need becomes more urgent for research into this complex aspect of survivorship. Working with survivors to carefully design accessible, inclusive research projects will help gather data that reflects real-world experience.
Knowledge and understanding will help validate people’s feelings, empower us to reduce the risk of survivor guilt and PTSD, and provide better supports to individuals and families living with this emotional weight.
Retinoblastoma can generate a vast legacy of guilt among survivors and siblings of all ages, parents, grandparents, partners, and other loved ones. The underlying emotions can intensify pain, distress; and destructive coping strategies.
Acknowledging the complexity of survivor guilt, allowing and exploring these feelings, developing healthy coping skills, asking for help, and finding peaceful acceptance together form a pathway through this trauma, to healing and positive growth.
We hope some of the approaches shared above will help you navigate your experience of survivor guilt with more understanding, patience, and grace. When emotions overwhelm us, every solution sounds far too simple to calm and heal our hurting heart and mind, and far too hard to implement. I know, because I have been there, and I often find myself pulled back to that place of incredulity. But as I work through these approaches in my own life – some easier than others, I know they can be life-changing.
All retinoblastoma survivors and families deserve to embrace our precious lives without survivor guilt. Please start with compassion. Tell your critical inner voice to shut up. Then take a breath, and just as you would support a dear friend, begin exploring the routes to healing that can work for you.
After the firestorm – these beautiful “fire followers” are among the first flowers to bloom after a wildfire. Credit: National Park Service / The Guardian
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.