Help Your Family Navigate a New JA Diagnosis
Juvenile arthritis can affect the whole family. Here’s how to make the transition easier for everyone.
By Stephanie Watson
A JA diagnosis can be traumatic for any family. Some family members may handle the news better than others, but it’s important to understand the concerns of those having trouble accepting it.
If your partner isn’t dealing well with your child’s diagnosis or won’t acknowledge the impacts of the disease, give them time. Denial is a part of the process, says Catherine Provenzano, a licensed clinical social worker at the Hospital for Special Surgery in New York. “Even though it seems like this negative word, denial protects the person from information they can’t handle at the time,” she explains.
The important thing is to recognize where your partner is in the process without taking it personally, she says. “Everyone experiences loss differently, and it is a sense of loss because you’re all adjusting to new challenges and limitations.”
Acknowledge what your partner is going through and allow time to adjust. If he or she continues to struggle, get support from a therapist who understands chronic disease or attend a JA support group together. Encouraging your partner to join an online community of JA families who understand can also help during this tough time.
Resentments can build in any relationship strained by illness, especially if one partner feels like they’re doing the brunt of the work. This is where open communication is essential.
Help your partner understand how actions affect you in a constructive way. Use statements like, “When I’m constantly the one responding to our child’s needs, this is how it makes me feel.” This statement should be followed by an assertive request like, “It would help me feel like I’m not alone if we took turns taking our child to the doctor,” Provenzano suggests.
If you and your partner continue to struggle with communication or understanding each other, see a couples counselor or therapist.
Don’t Neglect Your Relationship
The early days of a new diagnosis throw couples into “crisis management” phase, says Gail Robertson, PhD, clinical psychologist at Children’s Mercy Kansas City, and associate professor of pediatrics at the University of Missouri-Kansas City. “Everybody is very focused on next steps and what they need to do.”
During that time, you’re not going to be able to focus much on your relationship. But once the crisis phase passes, many parents still feel guilty about leaving the house and not spending every moment caring for their child, Dr. Robertson says.
She says taking time for your own relationship is essential. “It’s very much the concept of putting on your own oxygen mask [on an airplane],” she says. If you don’t take that moment to put on your own oxygen, you will burn out as a parent and as a couple.
Make Time for Other Children
When your attention is laser focused on the child with arthritis, siblings can get lost in the shuffle. “Oftentimes, children that are not sick and not getting as much attention feel ignored or that their lives don’t matter as much,” Provenzano says.
She encourages parents to regularly acknowledge their other children’s feelings. “Let them know you’re aware that you haven’t been giving them as much attention. Validate for them that you’re present for them and that you love them.”
If you’re short on time, do five-minute check-ins with each child daily to connect with them. “It’s not about how much time you spend with them. It’s more about the connections,” Provenzano says.
You may also want to consider getting your other children involved in the treatment plan. This can bring the whole family together around a common goal.
Keep a Routine
Finally, try to keep your household routine as normal as possible. Schedule time for all your kids to do the things they enjoy—whether it’s going to an amusement park or to the movies—even if you have to modify the activity for the child with arthritis. Enjoying time as a family can divert attention away from the new diagnosis and help everyone stay bonded.