Living with a chronic disease like diabetes, asthma or cystic fibrosis can be hard on anyone.
It can be especially hard on kids.
“Kids are incredibly resilient,” said Dr. Christopher Drescher, a clinical psychologist at the Children’s Hospital of Georgia. “Many are able to adapt and thrive and do well even with things like dealing with chronic illness. But we know that anxiety, depression and other mental health issues are definitely elevated in children with chronic health conditions.”
Anxiety and depression can look different depending on the child. It can include:
- Social anxiety around kids their own age, at school or other gatherings. This can happen especially if their chronic disease is obvious in some way, for example, if they need to use an inhaler for asthma or use insulin to treat diabetes.
- Medical anxiety around needles or procedures
- Sadness. It’s normal to be anxious and sad sometimes, said Drescher. But here we’re talking about extended sadness for two weeks to a month or more.
- Not taking care of their disease. For example, if your child stops checking blood sugar for diabetes or doesn’t do breathing treatments for cystic fibrosis.
- Any dramatic change. This can include sudden bad grades, trouble sleeping, major mood swings, bedwetting or cutting off friends
It’s also important to remember that parents/caregivers and siblings may need support too. For caregivers, there are so many stressors involved in taking care of a child with a chronic disease. Meanwhile, siblings can feel left out and resent all the attention given to the child who is sick.
Stop stress before it starts
Still, says Drescher, “I like to first have parents be proactive and not wait until there are signs that there is an issue. Since we know that anxiety and depression is something kids with chronic disease struggle with, try to routinely check in with how they’re feeling and how they’re doing in school. And come up with a plan to deal with things ahead of time instead of waiting until there’s an issue.”
If your child’s condition means he or she may miss a lot of school, may need frequent breaks or may need to get medical care at school, it might be a good idea—with your child’s permission, of course—to educate your child’s class about your child’s disease. “That way it’s not a mystery or a scary thing for the other kids,” said Drescher.
Teacher and staff education are important too, along with a plan to help manage any breaks needed or time missed.
For kids who will be out of school a lot, parents can also arrange for play dates at home or hospital visits, even plan Skype get-togethers. “That helps build in social activities and connections,” said Drescher.
At the doctor’s office or hospital
Make sure your child understands why he or she needs to have blood drawn or have certain procedures. It’s important to explain why, using developmentally appropriate information—“otherwise your child might think we’re torturing them for no reason,” said Drescher.
You should also tell your child’s doctor and care team about your child’s fears since they should have experience in this and could possibly even modify a procedure to help meet a child’s needs.
“It’s also very appropriate to reward a child for being brave and going through a medical appointment, for example by doing a positive activity afterward,” said Drescher. “Especially if they’re struggling with going to an appointment, you want a positive tied in with that.”
When it’s time to get help
If your child seems sad or anxious all the time, if your child doesn’t seem to care about taking care of his or her own health or if there’s a big change in how your child’s acting, it’s time to get some more help.
Start by reaching out to your child’s pediatrician or primary care provider. He or she can screen your child for anxiety and depression—and it’s something that should be done annually anyway if your child has a chronic disease. Your child’s doctor can then refer your child and the entire family to other services such as counseling, relaxation techniques and more.
“It’s also a no-brainer that parents being supportive is a helpful thing,” said Drescher. “Evidence suggests that if parents are sick or dealing with mental health issues, that has a negative impact on a child’s mental health. So definitely a parent taking care of his or her own stress is an important thing to do—not just for the parent but also for the child.”