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.