Feb 18, 2011 8:13 PM
Not long after her daughter was born in 1999, Sherrie Sisk began experiencing debilitating episodes of pain that left her feeling like she'd been run over by a truck.
"It was like the worst flu aches and pains you could ever imagine," she says. A few months later, she was diagnosed with fibromyalgia, a chronic pain condition characterized by fatigue and pain, particularly focused around certain "tender points" in the body.
Ten years later, she's learned to live with her condition -- and her daughter has grown up with it. "I have days when I'm relatively functional -- I hurt but it's manageable. On those days, I can take her to the park and drive her around," she says. "But on other days, I can't get out of bed."
How can you cope with chronic pain and still be the best parent you can be? First, it's important to communicate with your child.
Being a parent with chronic pain "reverses the family dynamic," says Daniel Kantor, MD, president-elect of the Florida Society of Neurology (FSN) and medical director of Neurologique, an organization dedicated to patient care, research, and education. "The parent no longer feels like the person taking care of the child. Sometimes, it can feel like the child is taking care of the parent. It can be very stressful on that relationship."
The best way to combat that stress is to talk opening about how you feel, Sisk says. "Kids want two things when it comes to chronic pain and parents: information and reassurance," she says. So don't hide your condition from your child. (Do you really think you can, anyway?) Instead, talk with them honestly about your pain and in an age-appropriate way.
While you keep the lines of communication open with your child, you also need to develop strategies that allow you to be as active a parent as possible while not pushing yourself so hard that the pain further debilitates you.
The most important thing to remember, Lowry says, is that your time and attention are more important than any activities you can do with your child.
"I felt terrible because I couldn't take my sons to Disneyland for awhile," she says. "But every day, I tried to shower, have makeup on, and look halfway decent when they got home. Even if I couldn't go downstairs and sit on the couch, they could come upstairs and sit on the bed with me and talk to me about their day."
Sisk, Lowry and other experts who've been there recommend a few strategies for making sure pain doesn't interfere with your parenting:
"Depending on your income status, you may even be eligible for assistance with taking care of activities of daily living, like a home health aide a few hours a day or week to help with chores and let you spend more of your energy on your children," says Sean O'Mahony, MD, medical director of the palliative care service at Montefiore Medical Center in New York.
"Chronic pain does interfere with the kind of parent I'd like to be," Sisk says. "There are things other parents can do that I can't. But what she really wants from me is to be with me -- and that, I can do."