What to Expect continued...
“You can say things like, 'Sometimes there will be times when I’m going to be very tired, and I’m going to have to take a nap to get my energy back,'" Klippel suggests. “Explain that when you stop doing what you’re doing to take a nap, it will help to get your energy back so that you can do all the things you want to do.”
Let your child know that flares may make things worse, but it’s not forever. “The family needs to understand that there are times when the disease will flare, and the pain will be increased and Mom will have swollen joints and not be able to do some things,” Klippel says. “They need to understand that those flares can be treated and after they’re over, Mom will go back to being Mom again.”
Remember, too, that discussing RA with your child is a lot like talking about sex: it’s not one big “Talk” with a capital T. Instead, it is an ongoing dialogue that evolves as your child matures and life happens, says Ferguson.
“It’s not a conversation you’re going to have once and be done with,” she says. “It’s going to be the time you promise to take them to the mall and you can’t. The thing you said you’d get done, and it wasn’t possible. There will be lots of ups and downs along the way.”
Ferguson recommends that you prepare with your child for flares and tough times with your disease.
“Ask your child what they might want to do with you if you don’t have the energy to play with them,” she says. “You might be surprised at the things your child wants from you. They might just want to sit next to you and read a book, or have you watch out the window from the couch while they do cartwheels.”
If a flare spoils a specific event, such as plans to watch your child’s school play, think of concrete things in the future he can look forward to instead. If you can’t trick-or-treat with your child, ask him to make a funny video while he’s going from house to house that you can watch together or tell you a funny story from his adventure.
And your children know there are things they can do to help you. Kids want to feel like they’re contributing to the family, so come up with age-specific strategies that can make things easier for you and empower your child at the same time. A 5-year-old can help fold laundry or put dishes away. An older child can help with cooking. Kids of any age can help you get much-needed exercise.