Take Control of a New JA Diagnosis
Learning that your child has a chronic illness like juvenile arthritis can feel overwhelming. A resilient attitude can make all the difference.
By Stephanie Watson
Few things are harder for a parent to hear than “Your child has a chronic illness.” You might feel like your family’s life will never be the same.
“It does take a while to get used to the fact that your child is going to be dealing with a chronic disease,” says Ekemini Ogbu, MD, MSc, assistant professor of pediatrics at the Johns Hopkins School of Medicine. “It’s not uncommon for parents to struggle to understand why this is happening to their child, and to their family.”
Having a positive attitude about the challenges that lie ahead will better equip you and your child to confront them head-on. Research finds that kids who are more resilient—able to bounce back from difficult situations—have less disability and aren’t as bothered by their pain.
But telling someone to “stay positive” is easier said than done, especially when you’re still processing a new diagnosis. In fact, building resiliency takes a lot of work, says Catherine Provenzano, a licensed clinical social worker at the Hospital for Special Surgery in New York. “Whenever there is a diagnosis of a chronic illness in the family, both parents and children go through the stages of grief. It can be helpful to recognize those stages and provide a safe space for everyone to express their feelings.”
Here are a few tips to help you cultivate resilience for you and your child.
Get in the Know
The more you learn about juvenile arthritis, the more in control you’ll feel, and the better able you’ll be to deal with whatever issues come along. As Provenzano says, “Knowledge is power.”
Talk to your child’s doctor and read books on your child’s disease, whether it’s juvenile idiopathic arthritis or another pediatric rheumatic disease. Always refer to reputable online sources like the Arthritis Foundation. “Start by educating yourself, and then educate your children, spouse and other family members,” suggests Gail Robertson, PhD, clinical psychologist at Children’s Mercy Kansas City, and associate professor of pediatrics at the University of Missouri-Kansas City.
Having a chronic illness can be scary to a young child, but it’s even more frightening when they have no idea what’s going on. “Be honest with your children and explain what they can expect, but in a way that’s age-appropriate,” Provenzano says. For more tips on explaining an arthritis diagnosis, click here.
Focus on the Positive
It can be easy to catastrophize about a chronic illness, but keep in mind that the outlook for kids with arthritis has gotten much brighter over the years. “Back in the day, we didn’t have access to a lot of the therapies that we now have,” Dr. Ogbu says. “Now we have medications and our approach to treatment is improving by the day. We understand these childhood diseases better and are able to use the available medications, so much so that we are able to get better outcomes now.”
Honor Their Struggles
It’s frustrating when kids can’t do the activities they love because of arthritis. Let your child know that it’s ok to feel a sense of anger and loss when they face limitations.
Provenzano says parents can help their children by listening to them, validating how they feel and slowly helping them shift their focus to the elements of their life that they can control. “When children focus on their limitations, it can make them feel hopeless and depressed. But when they focus on what they can control, it helps the child feel more empowered.”
Having arthritis can cause children to stand out at a time when they want nothing more than to fit in. A peer-to-peer JA support group is one place where they do fit. “Being part of a group of kids who are going through the same thing is incredibly validating,” Provenzano says. “It helps them feel like they’re not alone.” Events like JA Conferences and camps provide opportunities for kids to meet others like them.
Support is also critical to help you get a handle on your feelings. Seek out someone—whether it’s your partner, a family member, a close friend, or members of the arthritis community, to lean on. Or join a support group. “These are places where you can find people who have been through it and have seen the other side,” Dr. Robertson says.
Kids who are angry about their situation can act out. And when that happens, a sense of guilt may prevent parents from disciplining appropriately. “That creates an unhealthy dynamic,” Provenzano says. “Be consistent. Create an environment where they feel safe because they know what the boundaries are.” Allow your child to express anger in a healthy way, using positive coping skills they learn in a support group or from a therapist.
Let Your Kid Be a Kid
Arthritis can steal away some of the experiences that make childhood fun. “The illness is a big part of their life, but it doesn’t have to define who they are,” Provenzano says. Allow your child to develop interests and participate in activities that foster self-esteem but are still realistic. For example, if your family loves to hike, plan ahead to make sure the paths are accessible or have someone meet you with a wheelchair at the end of the path.
Give Yourself a Grace Period
Dealing with a new arthritis diagnosis is a major life adjustment. “I often tell parents the average human can handle about one major adjustment a year. When you have a chronic disease, it’s kind of like you’re being bombarded with a new adjustment all the time,” says Dr. Robertson. “It’s ok to give yourself grace and say, ‘I’m not great with this and I’m not moving on. I’m working through it over time.’”