Chronic illness and identity

What does it mean to realize one’s "self?" Why is it important?

If you think about what gets you out of bed in the morning, you can begin to hear an internal dialogue reflecting very existential, root values. These are values that reflect our beliefs about what we hold to be important, what our purpose is, and our focus in life. It gives a sense of belonging in a big world.

“Self” is a concept through which we hold certain things to be true about ourselves. It is the basis of our personality to realize what sets us apart from others. Imagine, for a moment, what you would say if someone just met you and said, “Tell me about yourself.” Now imagine that chronic illness has hijacked your life and you have forgotten some of that self. This is often the reality for those with ongoing illness, as well as for those who care for them. Instead of, “I am an avid golfer, team player at work, community advocate, and I belong in my family and community,” the dialogue can quickly become, “I am a sick person.” Or, “I belong in a hospital.” That doesn’t do a lot for promoting hope and meaning, does it?

Erik Erikson created a theory of human development that states that we all have eight crises that are essential to resolve in our lifetime in order to know our selves. His theory is called The Eight Stages of Psychosocial Conflicts, often known as Erikson’s Stages of Psychosocial Development.¹ These stages are essential since they create one’s sense of self.

Because developmental changes are happening throughout the entire lifespan, many obstacles may present themselves and interrupt these growth stages. Illness can certainly be one of those impediments, and deserves consideration whether you are the diagnosed individual or a caregiver. The intense focus of illness can waylay one’s process of becoming oneself, and create additional areas of challenge.

To provide a basis for this discussion, please consider the following outline by Erik Erikson for expected stages of development:

1. INFANCY: BIRTH TO 18 MONTHS | Basic Trust vs. Mistrust – Hope

During the first or second year of life, the major emphasis is on the parents’ ability to respond to a child’s needs. The child will develop trust and security if properly nurtured. If a child does not experience trust, he or she may develop insecurity, worthlessness, and general mistrust of the world.

2. TODDLER / EARLY CHILDHOOD: 18 MONTHS TO 3 YEARS | Autonomy vs. Shame – Will

The second stage occurs between 18 months and 3 years. At this point, the child can build self-esteem and autonomy as he or she learns new skills and right from wrong. A child who is nurtured at this age is sure of him/herself, possessing pride rather than shame.

3. PRESCHOOLER: 3 TO 5 YEARS | Initiative vs. Guilt – Purpose

During this period, we experience a desire to copy the adults around us, trying out different roles to see how they “fit” or not. Children in this age group play out different roles in their play, and with toys. The family is the most important source of praise and recognition as the young child tries out various ways of being and interacting.

4. SCHOOL AGE CHILD: 6 TO 12 YEARS | Industry vs. Inferiority – Competence

This is also a very social stage of development, and how our peers see us and interact with us contributes further to a sense of who we are in the world. If the social atmosphere is not welcoming or friendly, there can be difficulty feeling self-esteem and a sense of ones’ strengths. Naturally, during this time, school becomes more important, and the role of parents is not as primary in forming a sense of self.

5. ADOLESCENT: 12 TO 18 YEARS | Identity vs. Role Confusion – Fidelity

Rather than being dependent upon what others and the world do to him/her, at this point in development, successful adaption depends primarily upon what a person does for themselves. An adolescent must find his or her own identity, while managing social interactions and “fitting in,” as well as developing a sense of morality and right vs. wrong.

6. YOUNG ADULT: 18 TO 35 | Intimacy and Solidarity vs. Isolation – Love

At the young adult stage, people tend to seek companionship and love. Some also begin to “settle down” and start families. Young adults seek deep intimacy and satisfying relationships but, if unsuccessful, isolation may occur. Significant relationships at this stage are with romantic partners and friends.

7. MIDDLE-AGED ADULT: 35 TO 55 OR 65 | Generativity vs. Self-absorption or Stagnation – Care

Career and work are the most important things at this stage, along with family. For this stage, it is about producing something that makes a difference to society, be it at work, a child, or a cause. Major life shifts can occur during this stage. For example, children leave the household, careers can change, and so on. Some may struggle with finding purpose. Significant relationships are those within the family, workplace, and community.

8. LATE ADULT: 55 OR 65 TO DEATH | Integrity vs. Despair – Wisdom

Erikson believed that much of life is preparing for the middle adulthood stage, and that the last stage involves much reflection. As older adults, some will look back with a feeling of fulfillment, having led a meaningful life and made a valuable contribution to society. Some may have a sense of despair as they review their life choices. They may struggle to find a purpose to their lives, wondering, “What was the point of life? Was it worth it?”

Considering these pieces of becoming our “selves,” we can imagine the cross-challenges going on in a family who has ongoing health crises.

Consider, for example, being diagnosed with a chronic illness in Stage 6. Perhaps you are a 24-year-old with a college degree, ready to start your career, and establish a family. Once diagnosed, all of this can be put on hold. How do you date and court someone with the stigma and limitations of serious illness? What does this crisis do to not only your young psyche, but to your normal developmental milestones? Maybe this change derails the start of a career. Who are you if not your degree, your youth, your dreams? Meanwhile, you may have a parent in their developmental stage (Stage 7) who is needing to know that they nurtured a young person successfully into the world as part of their ‘meaning’ of existence. Maybe they need to open up their ‘nest’ again and return to caregiver roles. Maybe the changing boundaries cause friction in relationships as the ‘child’ returns home, despite being ready for autonomy.

It quickly becomes apparent that meeting a crisis of the developmental kind is not going to be first priority when illness strikes. This might call for some extra understanding and care for the self and affected others.

Suggested actions you can take

1) Be familiar with the developmental stage you are in, and the stage all affected others are in. Those who are not ill may even feel guilty that they find it important to seek resolution of their own challenges and care. For instance, there could be a sibling who is finding social relationships to be a necessary part of their growth and self-care, despite the seeming frivolity of engaging in a school dance, being on a sports team, or attending a game with friends in the face of the chronic illness of their family member. If there are opportunities to engage in healthy self-care, encourage it in each other.

2) Reach out to those around you and let them know that you understand it may be difficult to manage all the challenges being presented at this time. Recognize that even when the disease is taking front seat, there are many other considerations and challenges present.

3) Know that development is lifelong and doesn’t always follow a schedule. You will get there when you get there. If that means you go back and reclaim part of your identity when you feel more able, that is what is means. You won’t miss the chance.

4) Do what you can. If you have a day where illness is receded to the background, do what you can to remember “where you were” when the illness presented. Find your friends, do some journaling, play outside, do some artwork to express the emotions you have likely bottled up.

5) On hope: imagine a future self who is feeling resilient, strong, and supported. What do you want to leave of your present experience? What knowledge, support, or inspiration might you want to box up and pass on to the next person or generation? Your story is important. Please share it. It takes a village to heal, belong, and uphold each other.

¹Erikson, EH. Identity: Youth and Crisis. New York: Norton; 1968.