Rebuilding Identity After Childhood Cancer

Cancer treatment is incredibly demanding on both patients and caregivers. It's easy to completely lose touch with interests, hobbies, and skills that define one's identity during the process. For children, a cancer diagnosis disrupts critical years when their identities are being formed. 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 make sense of how cancer fits into the overall picture of who you are. These are things that evolve over time, as identity always does. As you try to come to terms with what has happened and how it has affected you, it may be helpful to consider which stages of your life it impacted, and how.

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. Recent research suggests that the early trauma of childhood cancer can lead to lasting effects in adulthood. If you have been affected by childhood cancer, you may identify with one or more of the challenges described below. Talking to loved ones about this or pursuing a healing relationship such as therapy may help. It's never too late to rediscover who you are.

Stage 1: Trust vs Mistrust (Infancy)

What it is: During the first year of life, infants are completely dependent on their parents and other caregivers. When close, consistent nurturing is provided and physical needs are met, children develop trust in their caregivers. Children who are deprived of these things instead develop mistrust in their caregivers and lack a sense of security.

How cancer can affect it: Children diagnosed with cancer as infants (or siblings) may experience a number of 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 start to regress if they do not feel like they have power over themselves.

Stage 3: Initiative vs Guilt (Early Childhood)

What it is: Once children reach preschool age, expectations start rising. Children are expected to be all but fully independent in daily tasks like dressing themselves and following directions. 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, the fastest, and the best at math. They can set long term goals like winning an art contest or mastering free throws. Achievements become more measurable, a 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 like hair loss or weight fluctuations make children stand out from others 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 unique 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 who they are and who they want to become with a sense of permanency. Without access to resources and 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 as they battle against the side effects of treatment. Instead of taking on more responsibilities, they must relinquish control as they fight for their lives. Adolescents are deeply aware of the life threat posed by cancer. The typical question of, "what do I want to do when I grow up?" is replaced by "will I grow up?". Teens who survived cancer at a younger age may similarly struggle to manage lasting physical side effects. Navigating life with a disability can leave teens feeling less mature than they are "supposed" to be. Or, being exposed to problems as serious as 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. 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 even 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 a person reaches middle adulthood, younger generations 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: At first glance, one may not expect childhood cancer to be of much relevance to those in later stages of life. However, there are many ways that older adults can be affected by childhood cancer, including as caregivers. As childhood cancer treatment advances, there is more hope that more children will be able to live full lives. At present, childhood cancer violates the natural order of things - put simply, no grandparent should have to outlive their grandchild. For older adults, a diagnosis of childhood cancer in the family can undermine a lifetime of pursuing values like fairness and protecting loved ones.

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.