Chronic Illness and Adolescence
Identity, parent/child relationship, and illness management.
Posted Jul 13, 2020
Adolescence is “a lengthy and often unstable transitional state from dependence toward autonomy (Smith & Shuchman, 2005, p. 613).” Under the best of circumstances, the transition from childhood to adulthood is challenging. Chronic illness complicates this transition for both teens and their parents. Identity issues, parent/child relationships, and illness management are all salient issues.
“Who am I?” is the central question of adolescence. Physical, cognitive, and emotional changes push teens to explore who they are and who they’d like to become. Identification with parents is loosened (sometimes painfully) and peers become increasingly important as teens redefine themselves (Zheng, Bruzzese, & Smaldone, 2019). Adolescents with chronic illness may face challenges in forming and maintaining these peer bonds. Stigma and fear of stigma create anxiety for adolescents living with chronic illness, as they grapple with whether and how to disclose their illness to peers (Kaushansky et al., 2016). Fear of peer judgment may cause some adolescents to disengage with peers, while other teens may conceal their illness lest they be viewed as “different." The social costs of living with illness (both real and perceived) thus affect identity development.
Adolescence is a time in which responsibilities gradually shift from parents to the young adult. Parental control decreases while adolescents assume more self-management. Chronic illness can complicate this process by “increas[ing] dependence on the family and carers at a time when this should be decreasing (Suris, Michaud, & Viner, 2004, p. 940).” Parents who have lived with their child’s illness understandably are protective of their child’s well-being. Sometimes, this protective instinct interferes with loosening control over the child. An anxious parent unintentionally may communicate to her child that he is not capable of managing his life without parental input, fostering anxiety and self-doubt in the adolescent (Suris, Michaud, & Viner, 2004).
A hot button topic in working with chronically ill adolescents and their families is non-adherence to treatment. Risk-taking, mood swings, and immature executive functioning can contribute to make illness management a bumpy ride for adolescents (Darcy & Samyn, 2017). Parents often find themselves in the painful position of confronting limitations to their control: They do not have the same influence over their teen regarding treatment compliance (taking medication as directed, following dietary and lifestyle recommendations, attending medical appointments) as they did when their teen was a young child.
What Parents Can Do and How Therapy Can Help
I advise parents to keep focused on the long-term picture. Your child isn’t going to go to sleep one night as a child and wake up the next morning as an adult; rather, it’s going to be a long process. Always be thinking: “How can I best support my child to grow into a happy and capable adult?” As adolescence progresses, the parental role should become less controlling and more collaborative (Compas et al., 2012).
With respect to identity issues, your teen needs peers to help her separate and individuate from you. If she’s not able to go to school due to illness, or if she is having difficulty connecting with peers, it’s important to seek therapeutic consultation. Even if she is relating well to peers, she may need a safe space — such as a therapist and/or an illness-specific support group — to reflect upon how to incorporate her illness into her adolescent identity.
Regarding the parent/teen relationship, it’s important for parents to have a handle on how all parties are reacting to normal adolescent separation. Is the teen so dependent on her parents that she is missing out on typical teenage activities? Conversely, is there a painful amount of hostility or distance between the parents and teen? Chronic illness adds anxiety and trauma into the parent/child relationship. Therapy and/or support from other similarly-situated families can allow the anxiety and trauma to be worked through, freeing up families to proceed with healthy development.
Finally, adolescent illness management is something that should be talked about openly and often. A therapist can be essential in sorting out with the family the underlying meanings of treatment non-compliance. For most adolescents, their executive functioning skills are not well-developed enough to remember medication dosing. With these teens, it’s useful to put a plan in place to help them bolster that functioning. They can pick out a pill case for the week and put their medication in for each day of the week. They can use phone reminders, place their medication where they will remember to take it, etc. It’s important for parents to work with their teen in formulating a plan and tweaking it as needed. Progression and regression are normal. For example, a teen may do fine on his own during the semester, but require parental assistance during exams or other stressful times.
Non-adherence to treatment also can have emotional meanings (Sawyer et al., 2007). Teens have complicated feelings about their illnesses. “Forgetting” medication can represent a powerful and understandable wish to deny illness and be more like other young people. Sometimes, depression and suicidal ideation in chronically-ill teens cause medication non-adherence. If your chronically ill teen is struggling with taking care of herself, a therapist can help her understand why it’s happening and develop a plan to get back on track.
Often, parents seeking help with this issue will say, “I just want her to take care of herself! Is that too much to ask?” I ask them to reframe the issue as follows: “I’d like to support her as she develops the skills to manage her illness.” When we reframe the situation as a process of skill development, we can take a step back, assess areas of strength and weakness, and implement a cooperative strategy where everyone wins.
Adolescence is a time of tremendous growth. We know that chronic illness has a “profound impact on a young person’s psychological, social, and physical health and future (Kaushansky et al., 2016).” Parents are essential both in serving as a resource and also in helping their teen use other resources (friends, therapists, support groups) to navigate this challenging time period.
Compas, B.E., Jaser, S.S., Dunn, M.J., & Rodriguez, E.M. (2012). Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol., 8, 455-480.
Darcy, A. & Samyn, M. (2017). Looking after young people with liver conditions: Understanding chronic illness management in the context of adolescent development. Clinical Liver Disease, 9(5), 103-106.
Kaushansky, D., Cox, J., Dodson, C., McNeeley, M., Kumar, S., & Iverson, E. (2016). Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illness 0(0), 1-13.
Sawyer, S.M., Drew, S., Yeo, M.S., & Britto, M.T. (2007). Adolescents with a chronic condition: challenges living, challenges treating. The Lancet, 369, 1481-1489.
Smith, B.A. & Shuchman, M. (2005). Problem of nonadherence in chronically ill adolescents: strategies for assessment and intervention. Current Opinion in Pediatrics, 17, 613-618.
Suris, J.S., Michaud, P.A., & Viner, R. (2004). The adolescent with a chronic condition. Part I: developmental issues. Arch Dis Child, 89, 938-942.
Zheng, K., Bruzzese, J., & Smaldone, A. (2019). Illness acceptance in adolescents: A concept analysis. Nursing Forum, 54(1), 1-8.