Your Child is More Than Their Chronic Condition

Raising a child with a chronic disease has earned you the right to be highly protective. Your child’s health may need so much of your attention at times that it may leave you with little bandwidth to focus on anything else. However, having the health condition define your teen or be the focus of your interactions could do more harm than the condition itself. It can be challenging for parents to act on this understanding because we are wired to protect our children. So, something that may threaten them naturally becomes front and center in our lives.

Focus on Varied Areas of Your Child’s Life

Your child may be suffering because of their medical condition. They may be missing some of the pleasures others their age take for granted, and by necessity, they likely have their disease take an oversized role in their life. But you know better than anyone that your child is much more than their condition. You may have to remind yourself to focus on other areas of their life. You may have to nudge relatives, neighbors, and teachers to see far beyond their illness. Most critically, you must ensure that your child sees themself as so much more than being “the kid with ___________.”

Here are three tips to ensure you see your child for all of who they are – not just their illness.

1. Protect, but don’t overprotect. Your adolescent deserves your watchful eyes because their condition may leave little room for error. But they also need to benefit from making mistakes that all humans make as they grow. How else will they learn to recover and make wiser and safer choices moving forward? A good rule of thumb: you didn’t let your child put their hand on the hot stove, but you did let them make a mess in the kitchen. Your child’s illness might create less room for errors because there are more hand-on-the-stove moments than other young people may experience. But let them be a bit messy in the areas of their life not directly affected by their condition. You don’t want your child to make serious errors in managing their condition. But you do want them to learn to take more responsibility while you can still supervise.  You can help them develop healthcare decision-making skills and learn how to build a close working relationship with a health provider.
2. Celebrate their self-discovery. The teen years are a time of identity development where young people wear multiple hats to consider their fit. They are working to answer the most foundational question there is. “Who am I?” They are hurrying to find the answer but won’t find it quickly. The good news is many of us rediscover ourselves over a lifetime. Still, adolescents have not yet earned that life wisdom. In their rushed journey, they’ll try to play different roles. Who am I to my peers? To my family? To my community? They’ll have to ultimately decide which roles work best for them. Your role: be happy there’s so much more to them than their condition. As your teen considers all the possibilities in their life, never forget who they really are. Focus on their strengths and let them stay grounded in them. Always be a sounding board as they share their interests, hopes, and dreams.  Be a constant reminder of all the good and potential you see in them.
3. Encourage participation in a range of activities. Your child’s health may limit their participation in activities, especially if health visits or treatments require a time commitment. However, precisely because the condition may rob your child of time and opportunities, it is more critical for you and your teen to be intentional about ensuring they participate in activities that bring them joy, expand their knowledge, offer physical exercise, allow them to express their creativity and emotions, and surround them with positive peer and supportive adult relationships. This ensures there will be multiple layers of how they see themselves and how others see and interact with them.

Why It’s Important to See Your Entire Teen

Parenting is a big job. It’s made larger as you protect and guide a child with a chronic illness. But your child needs your guidance in many areas of their life, having nothing to do with their physical health. Critically, they need to know they can come to you when they need you the most. It will likely be with a social, behavioral, or emotional issue having little or nothing to do with their health condition. If your child views you primarily through the lens of being the person who protects their health, they may feel wary of adding an extra burden to your plate and choose to withhold their other needs. Setting your focus on their condition aside as often as you can makes room for your child to show themselves to you.

Seeing your child beyond their condition also increases their broader connections to the world and strengthens your family. Notice your child as a sibling and a family member. As part of a community. As part of a faith group. Not only does this help them have a broader identity than their illness, but it will also ensure you leave room for other family members, your community, and faith.

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR020005. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.