Supporting Children and Teens With Chronic Illness

Navigating the teenage years is already full of changes, challenges, and big emotions—and when a chronic illness is added to the mix, it can feel even more overwhelming for both teens and their parents. From managing treatments and emotions to finding the right words to talk with friends and healthcare teams, parents play a crucial role in supporting their child’s well-being. Here’s guidance on how to better understand what teens may be experiencing, how to support open conversations, and practical ways to empower them to confidently manage their health and social lives.

Supporting Your Children and Teen’s Health Journey

Adolescence is a time of major physical, emotional, and social development—and for teens living with chronic illness, these challenges can be even more complex. Chronic conditions such as asthma, diabetes, juvenile arthritis, Crohn’s, or colitis can impact not only a teen’s physical health but also their self-esteem, relationships, and mental well-being.

Teens may struggle with feelings of sadness, frustration, helplessness, and isolation. At the same time, parents often experience their own emotional challenges, including helplessness, guilt, and worry about their child’s future.

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How Does Chronic Illness Affect a Child Emotionally?

Chronic illness can lead to intense emotions such as sadness, anxiety, helplessness, low self-esteem, and frustration. Children may feel different from their peers, struggle with a loss of control, and experience fear or worry related to ongoing medical treatments and changes to their bodies.

What Impact Can a Chronic Illness Have in Adolescence? 

Adolescence is already a vulnerable time of identity formation and peer integration. Chronic illness adds complexity, increasing risks for mental health challenges, social isolation, and feelings of being an outsider. Teens may struggle with self-image, independence, and managing both their health and social lives, often feeling powerless or burdensome.

How Does Chronic Illness Affect Family Relationships and the Individual?

Chronic illness impacts the entire family emotionally and practically. Parents often experience guilt, helplessness, and emotional strain. Teens may feel like a burden, leading to tension or withdrawal. However, open communication, emotional support, and empowering the teen to advocate for their health can strengthen family bonds and foster resilience.

Full Video Transcript

Our teenage years are when we experience rapid growth in our brains and our bodies. We start to become very aware of ourselves and ourselves in relation to others. This is a time where we definitely try our hardest to fit in with our peers, to be accepted by others around us. We know that this is a difficult journey at the best of times. But for kids experiencing chronic illness, this can be an even more complicated journey.

So chronic illnesses are those that present and that persist for longer than a year that can impact or impair functioning, and that requires some level of ongoing monitoring or treatment. So, examples include asthma, diabetes, juvenile arthritis, Crohn’s, and colitis. And we know that chronic illnesses can impact teens through changing their bodies, their brains, their functioning, and by extension, their psychological and their social functioning. That's why it should then be no surprise that for teens experiencing a chronic illness, they're actually more at risk of experiencing mental illness or mental challenges than their healthy peers.

How Chronic Illness Affects Teens Emotionally

So, what's it like for a teen that's experiencing chronic illness? We know teens living with chronic illnesses can feel very strong and intense emotions like low self-evaluation, low self-esteem, sadness, worry, helplessness, and hopelessness. They can feel frustrated about the need to maintain some level of contact with health care providers. And feel different and like an outsider at the very time when they're trying hardest to fit in. Teens can also feel powerless if they're kept out of conversations about their bodies or their health care. Teens can really feel out of control in this space. And finally, and most unfortunately, kids can really feel like a burden to their parents or their loved ones as they navigate their health journey.

Supporting Teens as a Parent: Emotional Support and Advocacy

But what's it like for parents who are supporting teens with a chronic illness? We know that this can be a tough road as well. And parents supporting teens with chronic illness can often struggle with their emotional well-being as well. Parents never want their children to suffer, to struggle, or to face difficulties. And unfortunately, chronic illnesses are not illnesses that parents can fix or change, or solve. So, parents will often feel anger, frustration, guilt, helplessness, and regret. So, despite all of this, it's important that parents support their teens through their health journey. And how do we do this? First and most important is for parents to reach out for support. It's very common for parent supporters to struggle; make sure that you have informal and formal supports around you to help you. Parent groups, online resources, and informal discussions with friends can really be a lifeline for parents struggling with their emotions in this context. Also, being sure that you're engaged with formal mental health supports if necessary. Clinical health psychologists like me work with parents all the time, helping them to manage their well-being so that they can support their teens effectively.

Helping Teens Build Confidence in Communicating About Their Illness

Parents should also make space to listen to their kids as they communicate their experiences. This can be painful for parents. As I said, it's tough for us to see our kids while they struggle. Nevertheless, teens need to be able to communicate their frustrations, their worries, their sadness, and their disappointment in a nonjudgmental way. That means being present and validating their experience, letting them know that their emotions make sense in the context of the life and the body that they're living within.

It can also be important for parents to help their teens communicate effectively with their health care team. This can mean sitting with your kiddos and making sense of some of their thoughts and feelings about their bodies and their treatment. Having discussions with your teens, using words that they can understand, helps them to make sense of some of the risks and benefits for engaging in or not engaging in various forms of treatment. Once you've worked out some of the wishes or values or thoughts that your teens have, help them to communicate this to their health care providers, help them to either write out scripts or write communications, and then encourage them when they're present with their treating team to use their own words to empower them to engage with their treatment.

Finally, it can be important for parents to help their teens open up to others around them about their illnesses as necessary and as appropriate. Teenagers often want to hide or conceal their differences, but we know that this can actually lead to more complications down the road. So, giving them the words and role-playing with them about how they can communicate to their peers or friends about what's going on for them can be really important. So, for example, Billy's at his first day at overnight camp, and we can help him put words to his experience to say to his cabin mates: “Hey, guys, I've got asthma. It's not a big deal. It just means that sometimes it's going to be tough for me to breathe. I've got my puffer. I know how and when to use it, and I'll reach out for help as I need it. Just thought you should know.”.

Really giving them the tools to effectively communicate can make a big difference in the lives of teens experiencing chronic illness. Chronic illnesses can be difficult for teens to navigate. As parents, it's important that we manage our own emotions so that we can stay calm and open to hearing the thoughts, experiences, and emotions of our teenagers. This will help to empower them and enhance their ability to maintain their own health and wellness through their teenage years and on into their adult lives.

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