When you have rheumatoid arthritis (RA), your day-to-day existence can be uncomfortable and exhausting. And don't be fooled—if there are children around, they know.
Whether they're entering kindergarten or gearing up for high school graduation, kids sense when you're in pain. They'll see you wince, or notice you're unable to do certain activities—and they'll worry. Studies show little ones will even conceal their own needs and emotions to keep from adding to your stress.
So, how do you explain RA to children, especially if they're your own? You can start by being honest.
Begin an open discussion
Choose a quiet, casual time—maybe in the car or during breakfast—and come out with it. The mood should be calm; skip the big family meeting, which will raise fears. Encourage them to ask questions, and answer as honestly and simply as you can.
Use facts, especially with teenagers, but keep terminology simple for the younger ones, since kids have varying levels of comprehension at different ages. Your teenager may understand sophisticated medical terms and try to learn more about RA independently. Your toddler may only grasp that mommy is hurting and can't play sometimes; a simple "I get boo-boos and have to rest" may be all she needs.
Whatever the age, children will want to know if you'll be all right. Remember to explain that the condition isn't deadly, and no one can catch it from you. Reassure kids that your day-to-day might be a little different, but most setbacks are only temporary, and you'll always be there for them. Comfort them as often as they need; hugs and kisses help.
Plan for your bad days
When you have RA, flare-ups are inevitable, and there are times when even the simplest movements are painful. Give your children a heads-up about your bad days—that you might have to lie down or take things slow, and you may not be able to play with them, or go to special events like you want to. It doesn't mean you love them any less.
Many kids want to know how they can help, and depending on how poorly you feel, you might need the assistance. Give them simple chores; preschoolers can pick up toys or set the table, while older ones cook or run errands.
Another proactive strategy: make a list of fun ideas for bad days. A movie marathon, board game tournament or coloring session could be perfect for times your mobility is limited by RA. Make it an ongoing mini-project; keep your list in a special place, and add to it whenever a new activity comes to mind.
Keep your chin up
Though you may not feel like it sometimes, it's important to try to maintain a positive attitude when you're a parent with RA. Not only will children learn from how you're handling the situation, it's thought by many experts that dealing with chronic illness can strengthen family bonds.
Joining support groups—online or in real life—may improve your outlook, as can speaking with a doctor about your mental and overall health. The Arthritis Foundation's Resource Finder has a database of people and places that can help.