Offer reassurance first and the rest will follow. Read on for age-appropriate ways to broach the subject of RA with your kids.
Maybe you can’t play on the floor with your little ones the way you once did. Or you’re too exhausted in the morning to captain the kiddie carpool. Or boiling hot dogs has become as daunting as making Thanksgiving dinner. When rheumatoid arthritis (RA) becomes part of your life, your kids will notice. And if you don’t address it, confusion, fear and stress will follow.
So how do you begin to explain a condition as tricky as rheumatoid arthritis?
First, don’t make a big deal out of it by calling a family conference. Instead, discuss your RA when the opportunity arises—for example, during a drive together or while you and the kids are assembling a puzzle. The mood should be calm, and everyone should be relaxed.
As the conversation gets going, let your kids take the lead. Focus on what they’re asking, and when you sense they’re satisfied with the answers and have enough information to process, drop the topic until next time. Remember, this is an ongoing dialogue. Depending on how old your children are, they’ll be at your side as you go through flares, fatigue, treatment and remission, and you’ll have plenty of chances to revisit the topic.
Here are some age-appropriate talking points to get the ball rolling:
Very young, preschool
What to say: Even young children are perceptive—they’re likely to notice that you can’t do certain things. But they don’t need to know confusing details or what RA meds you’re taking. Use simple language with toddlers, who may have limited vocabularies and may not understand pain. To show your children what hurts, point to your knee or elbow and say, “Mommy has a boo-boo here, so we can’t run around right now.” Preschoolers have a few more vocabulary and logic skills, so you can explain that, although you’re sick, you can still have fun. If you don’t feel well enough to play outside, for example, offer a choice of activities, so your children feel a sense of control. For example, say, “I’m sorry I don’t feel well enough to play in the backyard. Do you want to read a book or sing songs together?”
How they can help: Children can help make their favorite activities easier for you. Stack blocks or color a picture together on a table instead of hurting your knees and back by sitting on the floor. Or play on your strengths: You read the directions while your kids assemble the puzzle. And ask them to help with chores; even a 5-year-old can help fold laundry or set the table.
What to say: Kids this age may worry that it’s their fault you’re sick. Reassure them by saying something like, “Mommy doesn’t know how she got RA, but it wasn’t because of you.” Help your children understand that, while your RA symptoms may affect your physical abilities, you can still do things together. You might say, “We can’t play catch, because my shoulders will get sore. But we can collect baseball memorabilia together.” If a flare makes it impossible to attend a special event, explain why. You can say something like, “I’m sorry I can’t go to your play. I don’t feel well today.” Suggest ways you can make it up to them; perhaps you can watch a video of the performance together or get tickets to a local theater production.
How they can help: Ask your child to brainstorm about what the two of you can do together when you are low on energy. Maybe they’ll just want to sing songs or read a book together or have you watch them do a dance routine in the living room. If you need to stop playing outside with them so you can rest, ask that they be understanding. Head off disappointment by offering an alternative, such as, “I’m going to rest on the sofa until I get my energy back. Let’s make some popcorn and watch whatever DVD you want.”
Middle school and high school
What to say: One way to start the conversation is to simply ask what they know about rheumatoid arthritis. Often, they’ll think RA affects only the elderly. Tell them, “Adults can get RA. It’s not just for old people.” Explain that RA isn’t fatal and won’t change your relationship with them. Keep the conversation positive by saying something like, “I’ll have RA for the rest of my life, and sometimes I’ll need your help when my joints are sore, but we can manage it together.”
How they can help: If your hands are sore, ask your children to help peel and chop veggies for dinner. Ask that they pitch in with chores, such as folding laundry and vacuuming, when you aren’t feeling well. Or they can look after little ones while you take a nap. Don’t feel guilty—your children will benefit by learning about responsibility. When they help you out, dole out praise, and consider giving them a reward, such as a gift certificate to purchase movies online.