When Keri Cawthorne was diagnosed with rheumatoid arthritis last year, one of her biggest concerns was how it would affect her 10-year-old daughter.
“She watched me go through all the emotions. I wasn’t dying, I didn’t have cancer, but it was a hard one to take,” says Cawthorne, a fitness instructor and distance runner from British Columbia, Canada. “We’ve talked a lot about what it is that I have. She’d watch me come back when I couldn’t finish a run or see me in pain, and it really bothered her. She sees her mom as being young forever, immortal, you know?”
If you have rheumatoid arthritis, explaining it to your children -- and helping them cope with how it changes life for everyone in the family -- may be one of the hardest things you face. How can you talk to your child about your illness and prepare her for what you’ll all be going through?
Just start talking, experts say.
“When you’ve just been diagnosed, there’s a lot you don’t know, and that’s OK to say,” says Laurie Ferguson, a psychologist and vice president of research and education at the arthritis advocacy group, CreakyJoints. “The most important thing, first of all, is to reassure the child that this is something that can be dealt with. The fear factor is big, so reassuring them that you’ll still be there for them is important. Let them know that it may be that some things are going to be different, and that sometimes everything you plan may not work out the way you hope, but you’ll make up for that in some different ways.”
Cawthorne has already started off on the right track by being open with her daughter about her illness. Being open is vital, says John Klippel, MD, president and CEO of the Arthritis Foundation.
“There’s an amazing number of families that get torn apart by this disease because there’s not an openness in talking about what Mom is going through,” Klippel says.
What to Expect
Rheumatoid arthritis invades virtually every part of your life: dressing your kids, playing with them, preparing dinner, doing laundry, driving your car, doing your job.
“Every day, you have to cope with the pain and limitations that this disease imposes. That can be an enormous shock for the entire family,” Klippel says.
But your family can adapt. Cawthorne has trouble peeling vegetables but says her daughter often says, “That’s OK, mom, I just want a whole cucumber in my lunch anyway.”
When you start talking with your child about RA, you may not know what to expect because RA symptoms can be nonexistent one day and hit full force the next -- leaving you guessing as to when you’ll feel your best. But there are a few things that you can tell your family to count on, like fatigue and flare-ups.
“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.
Two things that are critical to good RA management are exercise and healthy eating. Exercise has been found not only to help reduce pain, but to improve your ability to move. Plus it can just generally make you feel better. And because rheumatoid arthritis puts you at higher risk of developing heart disease and diabetes, it’s even more important that you and your family eat right to help reduce that risk. And it’s another area where your kids can pitch in.
For example, because Cawthorne has a hard time holding veggies, especially cold carrots, and their peeler, her daughter helps make sure the family gets plenty of healthy vegetables by chopping and peeling veggies for her mom.
Finally, says Klippel, it’s important to give your child a healthy sense of optimism about the future.
“You will have to take medication for a long period of time, but those medications are going to help you,” he says. “It’s a disease that Mom will have for the rest of her life, but it’s one that can be managed. We used to think of this disease as inevitably causing deformity and disability, and that’s not true anymore.”