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.
Talking with Your Child About Pain
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.
- Expect to have this talk more than once. In some ways, talking to your child about chronic pain is like talking about sex. You’ll have to reinforce your messages over and over again, and modify them as your child gets older and can understand more.
- Keep it simple and honest. “Mommy hurts” is a good place to start with a younger child. “Explain to them that there are some things other parents can do that you can’t,” says Sisk. “Tell them what your condition is called and what it means.”
- Reassure them. Your child needs to know that you aren’t going to die, and that chronic pain isn’t contagious -- just because you have it doesn’t mean they’ll get it.
- Let them help. Just bringing you a glass of water can make a child feel special and important. Just be careful that your child doesn’t turn into the caregiver. Kantor says he knows of 12-year-olds giving their parents their medication injections. “An adolescent shouldn’t act in the role of doctor or nurse.”
- Listen to your child’s concerns. “Ask your child what it is about your condition that really bothers them,” says Maryann Lowry, a retired special education teacher who coaches families on parenting with chronic pain after her own decade-long battle with chronic pelvic pain. “But do it on their timetable. If they come to you upset or concerned, don’t just say ‘it’s OK’ -- ask them what upsets them. For example, you son may feel like you got sicker because he begged you to take him to swim practice. You don’t want to leave a child with that thought.”
Parenting Through the Pain
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:
- Plan. If Sisk knew her daughter had a big dance recital coming up, she’d take it easy for several days ahead of time and asked the dance teacher to let Kayleigh leave the night-before rehearsal immediately after her number, so Sisk could rest. “Think of it like a bank: make deposits so you can be ready to make a withdrawal on a certain day,” she says.
- Pre-medicate, if necessary. “If you know you’re going to need to be more active on a given day, take some medication ahead of time -- don’t let the pain get too hot to cool down,” says David Rosenfeld, MD, a pain specialist with the Atlanta Pain Center. “There are also very good fast-acting medications out there for breakthrough pain.” Some are absorbed through the mucosa of your cheek and kick in much faster than even a ‘fast-acting’ pain pill.”
- Focus on what you can do, rather than what you can’t. “I can’t go roller-skating and rock-climbing with my daughter, but I can go and watch her,” Sisk says. “I can walk the dog with her and swim, even though I can’t do it for very long.”
- Look at what’s causing the pain and find strategies to alleviate it. “For instance, if your son plays basketball and by the end of two hours in the bleachers you’re in horrible pain, try little tricks to minimize it,” says David Kloth, MD, founder of Connecticut Pain Care in Danbury, Conn. “Alternate sitting and standing, or go out to the car at halftime and sit on a softer surface. Or only come for the second half of the game.”
- Get some help. Don’t be afraid to ask for help -- from your family, your friends, your church, your community groups. If you know other parents with chronic pain, trade days -- you take the kids on a day when I feel lousy, and I’ll do the same for you.
“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.”