What parents and children should know when kids develop a chronic illness

A chronic illness is a medical condition that can be managed but not cured. While learning about and incorporating the physical aspects of a new diagnosis can be challenging, navigating the emotional challenges can be more difficult than accepting the physical aspects of a disease.

The new diagnosis may be a food allergy, asthma, diabetes, or a cancer diagnosis. Kids need their parents or guardians to help them handle it, and parents often need help as well. Moms and dads are often more upset than their children, and the struggle can affect their children too.

How a medical diagnosis affects a child

A child with a new medical diagnosis starts to think of themselves as “different,” as having a limitation. The most common mental health issues they face are anxiety and depression. Chronic medical illnesses and the emotional toll they take can disrupt:

• School: A child may miss school for varying periods of time or must be home-schooled.
• Extracurricular activities: A child may not be able to participate at their pre-diagnosis level or at all.
• Friendships: Kids with some kinds of restrictions may feel isolated from their peers.
• Social activities: Some conditions, such as food allergies or a medication regimen, can interfere with parties, sleepovers, or other activities.
• Normal psychosocial development: Diagnosis at an early age can interfere with normal adolescent tasks, such as separating from parents.

Kids don’t want to feel left out or different. These disruptions, especially at key developmental times, can lead to behavioral problems, anxiety, and depression.

Not all children will face emotional struggles, especially if the people around them make them feel safe and secure. One of the things that may cause children to struggle more is being older. Teens will worry more than very young children. Experiencing disease or treatment complications or facing what feels like threats to their body (e.g., surgery) increases a child’s risk for mental health issues. Kids also struggle more when their parents are struggling.

How can parents help?

It’s natural for parents to want to protect children from the difficulties of a new medical condition and avoid talking about it. Not talking about it at a developmentally appropriate level, however, causes a child to become more anxious.

If a parent is unsure how much to share with their child, they can get guidance from a medical professional. Sharing information about a child’s diagnosis should be accompanied by an explanation of what is being done to help the child.

What about older children?

As children get older, they want to take more control of their treatment, but they may be less compliant. Ages 12 to 18 are when kids want more autonomy. Family conflict may arise. Parents should involve the adolescent in their medical decision-making as much as possible so the teen feels like they have some control over their condition’s management.

Parents have to be clear and consistent about their expectations for their teen’s behavior. It may be helpful to make medication and management contracts with older children.

As much as possible, set the same behavioral expectations and boundaries as you would with a disease-free child, including things like homework and helping around the house. Try to treat siblings the same. A child with a medical diagnosis doesn’t get a “free pass” to avoid the responsibilities of living. Maintaining structure is important.

How to know when your child needs more professional help?

Here are some warning signs for kids between three and 10 years-old:

• Nonstop thinking about their health
• Worrying about the health of other family members
• Sleep disrupted by worry
• Blaming themselves for their illness
• Having physical symptoms not related to their medical condition, like headaches or stomachaches
• Being disruptive in school

Among adolescents, stress looks more like depression or disruption in relationships. Those warning signs may include:

• Social problems
• Withdrawal from and conflict with peers
• Inability to find pleasure in usual activities
• Change in grades
• Hopelessness

Parents can struggle when their children get sick

It’s not unusual for parents to be more affected than children when kids receive some sort of long-term medical diagnosis. Unfortunately, that can make adapting and managing more difficult for a child. Kids sense when parents are uneasy and it can upset them, too. If a parent thinks a child is very fragile or in danger, the child may begin to see themselves that way, lowering the child’s resilience. The parents may have a tough time setting limits, leading to their child acting out. Self-care is essential!