Rebuilding Identity After Childhood Cancer
By Allie Neenan, PhD, LP | Last updated 12/6/24
Recent research suggests that the early trauma of childhood cancer can lead to lasting effects in adulthood. A cancer diagnosis disrupts critical years of identity formation, and it's easy to lose touch with interests, hobbies, or skills that define one's identity. At any age, cancer has a huge impact on patients, caregivers, and loved ones. If you have been through cancer, you may find yourself on the other side wondering, "who am I?"
Rebuilding your identity is no easy task. It is a lifelong journey to figure out how cancer fits into the picture of who you are. Like your identity, the effect of cancer on your life will evolve over time. Talking to loved ones about this or pursuing a healing relationship such as therapy may help you make sense of your journey. Reflecting on the stages of your life that were most affected by cancer is one way to pinpoint the support you most need.
One of the most famous systems for understanding typical identity development is the Erikson Stages. Developed by psychologist Erik Erikson, the Stages represent different life periods and the essential tasks of identity development that happen in each.
Stage 1: Trust vs Mistrust (Infancy)
What it is: During the first year of life, infants are completely dependent on their caregivers. When children's needs are met, they develop trust in their caregivers. Children who are deprived of care and comfort instead develop mistrust in their caregivers and lack a sense of security.
How cancer can affect it: Children diagnosed with cancer as infants (or their infant siblings) may experience threats to a secure attachment. Medical trauma cannot be prevented, which is painful for children and parents alike. At times, children may be separated from one or more caregivers due to the demands of treatment, or they may be confined to a hospital bed where they can't be held. As a result, children may miss out on physical comfort that facilitates trust.
Stage 2: Autonomy vs Shame and Doubt (Toddlerhood)
What it is: Toddlers make leaps and bounds towards independence after infancy. They can choose where they walk and share their opinions when they talk. Children who are given the opportunity to develop their motor, speech, and social skills grow more confident in themselves. In contrast, children who are scolded or restricted start to doubt their minds and bodies.
How cancer can affect it: A cancer diagnosis during toddlerhood fully reverses a child's development. Children often lose the ability to walk, feed themselves, and use the bathroom independently. Immunocompromised children cannot explore outside or be social with others, further limiting their autonomy during this sensitive period. Toddlers may regress due to these limitations.
Stage 3: Initiative vs Guilt (Early Childhood)
What it is: Once children reach preschool age, expectations start rising. Children are expected to take initiative in daily tasks. They can set goals like drawing a picture or building a tower of blocks. Through games and chores, children learn the difference between success and failure. Children who achieve age-appropriate "wins" become more ambitious, while those who don't feel pangs of guilt.
How cancer can affect it: At this age, children often want to help. They are acutely aware of the physical weakness caused by cancer treatment, which can be very upsetting. When children can't use their bodies the way they want to, they may withdraw or act out behaviorally. At this age, children often need extra support in order to feel accomplished in non-traditional ways (i.e., "helping" by taking medications when someone asks them to).
Stage 4: Industry vs Inferiority (Middle Childhood)
What it is: Elementary school-aged children have newfound abilities of comparison. They know who is the tallest or fastest. They can set long term goals like winning an art contest or mastering free throws. Achievements become more measurable, and children define themselves in relation to their peers. Inferiority sets in when children are unable to find a skill that they can grow in and be proud of.
How cancer can affect it: Children enduring cancer treatment are removed from the social world of their peers. This includes school as well as community settings other than the hospital, for most children. Physical changes make children stand out in ways they do not choose and may even be ridiculed for. At this age, children are particularly sensitive to being seen as "the kid with cancer" and having their identity erased.
Stage 5: Identity vs Role Confusion (Adolescence)
What it is: Teens are tasked with bridging the gap between childhood and adulthood. They make commitments to friends, family, colleges, and passions. For the first time, they have the capacity to reflect on their identities with a sense of permanency. Without opportunities for growth, teens may struggle to distinguish themselves as fledgling adults.
How cancer can affect it: At a time when everyone else is focused on the future, teens with cancer are living minute by minute. Instead of taking on more responsibilities, they must relinquish control as they fight for their lives. The question of, "what do I want to do when I grow up?" is replaced by "will I grow up?". Teen survivors may struggle to manage lasting side effects, and navigating life with a disability can leave teens feeling less mature than they "should" be. Alternatively, being exposed to cancer may lead teens to feel like they grew up too fast compared to their peers.
Stage 6: Intimacy vs Isolation (Young Adulthood)
What it is: While the child and teen years are defined by large social settings like school and sports teams, adults typically focus their attention to a few close relationships. Close friends and romantic partnerships become the focus of one's world in young adulthood. Without these kinds of relationships, adulthood quickly becomes isolating.
How cancer can affect it: Childhood cancer survivors may struggle with intimacy for a range of reasons. All of the previous life stages can be disrupted by cancer, driving a wedge between children and their peers. These differences are often cumulative, leaving young adult survivors in a position where connection feels impossible. Cancer treatment can lead to infertility, further threatening plans for a "typical" life after cancer. These issues are not exclusive to diagnosed children or siblings. Parents of children with cancer are often young themselves, given that some of the most common childhood cancers occur primarily in infants. The trauma of caring for a child with cancer can severely impact a parent's ability to be present in intimate relationships.
Stage 7: Generativity vs Stagnation (Middle Adulthood)
What it is: Once middle adulthood arrives, there are younger generations who have solidified their presence in the world. A core task of adulthood is creating a positive impact on the world for one's children - or children as a whole - to inherit. Without continued progress towards goals, one's life can feel like it's come to a standstill.
How cancer can affect it: First, survivors who reach middle adulthood often find themselves facing a host of challenges. The physical cost of cancer treatment is abundantly clear, with 95% of survivors having significant health issues by age 50. This burden can make it impossible to achieve the level of productivity that one may like to. Parents, siblings, and others who take on caregiving roles may similarly find themselves unable to achieve the career goals they once set for themselves. Too often, loved ones become bereaved due to childhood cancer. Loss of purpose is a serious challenge for those grieving a child lost to cancer, especially as more time passes.
Stage 8: Integrity vs Despair (Late Adulthood)
What it is: The final Erikson stage applies to older adults. Ideally, these individuals are able to appreciate the integrity of their actions as a representation of their values. Otherwise, despair may reflect the grief of living an unsatisfying life.
How cancer can affect it: By definition, childhood cancer may seen unrelated to late adulthood. However, there are many ways that older adults can be affected by childhood cancer, including as caregivers. For older adults, a diagnosis of childhood cancer in the family can undermine a lifetime of pursuing values like fairness and protecting loved ones. Childhood cancer violates the natural order of things - no grandparent should have to outlive their grandchild.
Putting It All Together
The timing of a cancer diagnosis and treatment is one factor that shapes its long term effects on identity. Cancer rarely affects just one developmental stage, and there is a significant grieving process that comes with naming the loss of normal childhood experiences. It takes time to recognize what cancer has taken from you and what you hope to reclaim. Letting yourself choose where cancer fits into your story is a major milestone in rediscovering who you are.
All content on Cancer Cushion is provided for informational purposes only. Individuals experiencing a mental health emergency should contact their local crisis line or dial 988.