As a parent with rheumatoid arthritis (RA), you have to balance your children’s needs with your own health. You help them with schoolwork. Play with them. Comfort and discipline them when needed. And handle the zillion day-in, day-out tasks that come with parenting. All the while, you also manage fatigue, joint pain, and other RA symptoms.
Parenting is tough — but rewarding — to start with. Throw in a chronic condition like RA, and that delicate balance between your self-care and your role as a parent can easily get thrown off.
These tips and strategies can help you handle difficult days, manage your energy, and make meaningful memories with your family.
If unclipping your child’s car seat is painful or you struggle to carry your toddler, look for products that help. You can search for useful tools online, or an occupational therapist can offer suggestions and ways to make tasks easier on your joints.
Mariah Leach, 37, a mother of three and freelance writer who often writes about living with RA, says she used baby and toddler carriers with all three of her children.
“Having a comfortable baby carrier for an RA parent gives a way to be close and bonded without putting strain on your wrists and shoulders,” says Leach, who lives in Louisville, CO.
She also used infant sleepers with zippers with her third baby, after having trouble with the tiny buttons on sleepers with her first two children.
As a parent, your to-do list may be endless. But it’s important to pace yourself. Doing too much can result in an RA flare-up and fatigue.
Kelly O’Neill, 55, is an author and president of the Rheumatoid Patient Foundation. A mom of five children ranging from ages 15 to 30, she suggests focusing on what matters most to you and your family.
“I think probably the biggest challenge for me and a lot of women is your expectations of what you want to do and give and be in your life — especially for your children — and then knowing you can’t meet those expectations anymore,” says O’Neill, who lives in Orlando, FL.
For O’Neill, that meant concentrating on tasks that only she could do. “I would think, only I can hold and bond with the baby right now, so someone else can clean the bathroom,” she says.
Ask your partner, a family member, babysitter, or even your older kids to help with tasks that are difficult for you.
O’Neill says her children held her purse and pushed the shopping cart at the store, and worked alongside her in the kitchen. Cooking dinner became a family activity where her children gained new responsibilities as they got older. Now, her older children are talented cooks.
“Good things can come out of relying on them and letting them grow into responsibilities,” she says.
When you allow them to grow into that role, keep in mind that it will take time and experience. Like everything else, it won’t always go smoothly. Try to resist the urge to just do it all yourself, because in the long run, that won’t help.
A little planning can make a difficult day run smoother.
Leach shares her go-to strategies:
When she feels well, she makes extra meals and freezes them to use on challenging or busy days.Rotate children’s toys, keeping some stored away in a closet. If she wakes up in pain or needs to rest, she’ll bring out toys from the closet, which will often hold her kids’ attention longer because they haven’t played with them in a while.Keep simple crafts on hand. Her kids can do these while she rests nearby.
Every parent goes through times when they’re sleep-deprived. Since fatigue is common with RA, it’s especially important to get enough sleep.
“Moms talk about not getting enough sleep and being exhausted and overwhelmed, and then when you throw in physical pain and the fatigue that can come with a chronic illness, it makes it even more challenging,” Leach says. “You can’t pour from an empty cup.”
Downtime is not negotiable, O’Neill says she learned. “Rest is critical,” she says. “I feel like it’s one of the most important things you can do.”
When Leach became a new mom, she struggled to find other moms living with RA. So she started a Facebook group, Mamas Facing Forward. She says the group is a place where moms can offer and get support, brainstorm solutions, and share experiences.
“It helps to know that someone else is out there, they’ve faced these challenges and made it, and you will too,” she says.
O’Neill agrees. She says meeting others with RA helped her feel less alone, and led her to the advocacy work she enjoys today.
While getting on the floor to play or shooting hoops may not always be possible for you, chances are, there are other family activities that everyone can enjoy.
“You can find ways to spend time with them, even if it’s watching a movie or telling them stories or having conversations with them,” O’Neill says. “What they really want is your attention. And you can give them that no matter what.”
Leach agrees. “They don’t care if the house is perfect or they have a cute outfit on,” she says. “They just want you.”