When your child is sick, your time, energy and thoughts are all focused on their physical wellbeing. Doctor’s appointments and treatment days alone can fill up your family’s entire schedule. However, kids with chronic illnesses often face a whole set of challenges that go beyond the physical like trying to learn who they are and how to fit in at school—despite their illness.
Understanding these issues can help you decide what to do if your child comes to you for help, or if your gut instinct as a parent tells you something just isn’t right.
What’s a chronic illness?
Chronic illness is a general term used for any ongoing or long-term medical condition that needs care and attention over time. For example, lifelong conditions like asthma, cystic fibrosis and diabetes are chronic illnesses, but a cold or the flu isn’t.
How kids think about sickness
Children often have a hard time understanding sickness and why it’s happening to them.
“When they have an illness, young kids in particular tend to think, ‘what did I do to cause this?’” says David Rosenberg, MD a pediatric intensive care doctor and the Medical Director for Inpatient Pediatrics and the Pediatric Intensive Care Unit at Grand Strand Medical Center in Myrtle Beach, South Carolina.
Children might think they’re being punished for misbehaving or fighting with a sibling. Siblings can have those same thoughts and feel incredibly guilty about making their brother or sister sick.
If you’re having trouble explaining the condition to your child, ask if the hospital or doctor’s office has a child-life expert who can help, recommends Dr. Rosenberg.
Child-life experts are trained to think like children. They help kids learn about frightening diagnoses and procedures through:
- Kid-friendly language
- Toy versions of scary things like needles
- Games that both teach and distract them at the same time
“The important thing is to utilize your resources,” says Rosenberg. “Parents don’t have to have these hard conversations by themselves.” You can ask a child-life expert, a social worker or a hospital chaplain for backup.
The case for telling kids the whole truth
“I firmly believe that patients have the right to know what's happening,” says Rosenberg. “Sometimes parents will say, ‘I don't want them to know,’ or ‘how can they handle this?’ and my response is that they probably already know how serious their condition is.”
Children pick up on more than you may think. They can tell when teachers and adult relatives start treating or looking at them differently—explaining why can help them feel less afraid.
What’s more, research shows that kids who are informed have less anxiety during and better coping after procedures. Talking to a child-life expert has even been found to help children feel less pain during procedures.
Don’t relax your parenting
Chronic illnesses can make kids grow up fast, which may cause family members to treat them like small adults.
But even if they’re showing a brave face while you feel like breaking down, don’t let your child think they have to be the adult in the relationship. Despite the stress and unpredictability of illness, offer them as much structure as possible and, yes, even rules.
It’s hard to discipline a sick child, but kids need direction. They’re still learning right from wrong and hearing “no” when it matters will help their long-term development.
Feeling a sense of control
Having an ongoing illness often means that kids’ days are built around rigid hospital schedules. Even when kids are home, sickness can take away from the freedom and carefree experience of childhood.
Kids may try to regain a sense of control over their lives. That can mean refusing their treatments or medications.
Offering more choices can help get their treatment schedule back on track. For young kids:
- Let them pick a colorful tea cup or favorite superhero mug for liquid medications
- Ask which medicine they’d like to take first
Telling them they can choose a fun activity or outing afterwards might motivate them to cooperate during medicine time too.
Life after the hospital
When kids go back to school after a long absence, settling back into their old routine isn’t always easy—especially if they look different than they did before.
“The reintegration of children into school is actually a process that you start in the hospital,” says Rosenberg.
A social worker or hospital teacher should help your child tackle issues like:
- Feeling insecure about physical changes like hair loss or burns
- Having new learning needs if treatments like chemotherapy and radiation have changed their thinking abilities
Involve the school ahead of time too, says Rosenberg. Meet or talk via phone with the principal and teachers to let them know about:
- Appearance changes: send pictures so they can prepare classmates and prevent bullying
- Needing new classroom accommodations
- Symptoms that teachers should watch out for
Teachers should have an emergency action plan and know exactly when to call 9-11 if your child’s condition changes.
Don’t go it alone
As a parent, you want to do everything possible to shelter your child, says Rosenberg. But if they’re ill, you can’t control every situation.
That loss of control can feel confusing and overwhelming, but you’re not alone. Reach out to friends, your place of worship or a support group for help when you need it.
