Being the parent of a child with a chronic illness can feel as if the world is on your shoulders. Why? Chronic means the illness is persistent and lasts longer than three months. There is no cure for chronic illnesses, and symptoms vary in intensity and can change over time. A chronic condition can affect everyday activities, cause frequent hospitalizations, require home health care, increase financial strain, and trigger school absences.
Dealing with all of this uncertainty is taxing! One out of four children in the U.S. are diagnosed with a chronic condition—that’s 15 to 18 million children age 17 years and younger (Compas et al., 2012)! Examples of chronic illnesses are diabetes, cancer, juvenile arthritis, AIDS, spina bifida, and asthma.
A chronic medical condition not only affects the child with the diagnosis, but also the entire family. Think of the family system as a car: all the parts have to work together to make the car run properly, right? Something as simple as a flat tire can cause the entire system to slow down. Similarly, a chronic illness can cause hiccups in the family system.
Let’s focus on you parents, the family car’s engine. Parents of children diagnosed with chronic illness report stress from seeing their children in pain, witnessing academic struggles, and undergoing endless doctor appointments, therapies, hospitalizations, and financial burdens. You generally feel pulled in different directions. Talking to others may be embarrassing, or you may not want to be pitied. You most likely don’t have the energy for doing separate activities with your nondiagnosed children—not to mention getting intimate with your partner!
Parents are role models for children in every way. We model healthy relationships, problem-solving, and stress management. If we’re not coping well, neither will our children. According to the American Psychological Association, “A study of children with type 1 diabetes found high levels of parental distress were associated with higher stress and depressive symptoms in their children,” (Bourdeau, 2013). Simply put: The better you cope with the diagnosis, the better your children will cope with it.
So what are you to do, as parents, when you feel pulled in different directions, but want to help your child cope in a healthy way? Here are four tips to help:
- Know your child’s limits: Are there any limits (physical or emotional) when dealing with this particular illness? If so, what are they? Learn about the illness and about the challenges that are associated with it, and then assess your child’s abilities. Understanding the illness and its potential limitations can help your family be better prepared for those adversities.
- Challenge your child: Help your child find ways to achieve his or her goals. Find new and feasible interests like adaptive sports, art, music, or other hobbies. Getting involved with peers raises self-esteem and helps children with medical challenges feel “normal.”
- Lose the “get out of jail free” card: Many parents feel bad (guilty, sad, or responsible) that their child has a chronic illness, and they sometimes lower expectations and rules to make up for it. Discipline your child when he needs to be disciplined. Hold her accountable for her behavior and attitude. Not disciplining causes bigger problems than enforcing rules and expectations.
- Put your own needs first: I know this is difficult for most parents. Remember that you are the engine in the family car—you need fuel and oil changes, and you need to be flushed out on occasion! Take care of yourself. Feeling angry, guilty, or sad is a normal part of the process. Talking to others and asking for help shows your children how to problem solve.
Coping with your child’s illness is challenging and exhausting. But it can also bring your family closer together when you know your limits and others’, encourage each other, and work together. Your children will imitate you, like it or not. Be a positive role model for stress management and open communication by taking care of yourself.
References:
- Bourdeau, E. (2013). When your child is diagnosed with chronic illness: How to cope. Retrieved Oct. 2013, from http://www.apa.org/helpcenter/chronic-illness-child.aspx
- Compas, B., Jaser, S, Dunn, D and Rodriguez, E. Coping with Chronic Illness in Childhood and Adolescence. Retrieved Oct. 2013, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3319320/
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