Welcome to the Mindfulness for Resilience in Illness: Support for Parents series. This is part three of a series of four articles on parenting a child with a pain condition. This installment discusses ways to communicate with others and seek social support in a circle of care, which can make all the difference when caring for a child with chronic pain.
Read part two | Managing Parent Stress When Caring for a Child With Chronic Pain
Communicating with your child
Communication is a major struggle for many parents of children with chronic pain. After all, it’s up to the parent to care for their child, manage the family, and tackle the demands of health care and schools, and extracurriculars. It’s not easy. Pediatric pain specialist, Dr. Lonnie Zeltzer explains how good intentions and natural parental instincts to check in can sometimes make pain symptoms worse—not better:
“We want to ask ‘What’s wrong?’ We want to ‘solve’ the problem…If we have a child with a history of headaches or stomachaches, we may want to ask, ‘Are you in pain? Does your head (or stomach) hurt?’ While such questions are rooted in good intentions, this approach may not be in the best interest of your child.
The problem is that once you ask your child if she is in pain, you have caused her to stop whatever she was doing at that moment and to scan her body to determine if she is in fact hurting. Once the brain puts full attention on the body and on pain specifically, the pain is immediately magnified: all the brain’s perception areas become focused on the pain and the pain is felt more intensely.”(1)
Unless there is some reason why your child cannot communicate pain to you, Dr. Zeltzer advises that the better approach is to explain to your child that you will not be asking if he or she is in pain, but rather invite the child say when he or she needs help. This takes the focus away from the pain and toward finding coping strategies that can help when in pain. Here are some tips for communicating with your child:
Get centered. Use your skills to calm down before communicating with your child. Children can pick up their parents’ emotions and behaviors. The calmer you are when talking to your child, the better.
Stay on the same page. Explain to your child the information you are learning about pain and why you are looking into certain types of treatment. This will help your child feel more in control of his or her body and pain.
Be a coach. Remind your child of potential coping strategies to use and model the skills.
Shift focus. Redirect attention away from pain. If your child were not in pain, what would you talk about (hobbies, social events, success at school, etc.)?
Promote positivity. Start to look for what is going well and the small accomplishments and improvements. Take in the good and acknowledge the gains.
Limit negativity. Try to avoid expressing worry or concern around your child.
Name it to tame it. Talk to your child about the emotions he or she is feeling, name the emotions and thoughts—such as frustration or sadness—rather than the pain.
Of course, communication with children can be tricky. Most children know their parent’s soft spots. Setting boundaries is an important part of parenting but can be especially difficult when your child has chronic pain. Consider the following suggestions from Dr. Samantha Levy, a pediatric pain psychologist, for setting boundaries:
- Try not to be at your child’s disposal. If your child is having trouble staying at school and a parent is always available for pick-up, he or she will quickly learn to take advantage of that. Consider setting “appointments” for yourself (even at a local coffee shop), in order to not be available to your child 100% of the time.
- Bond beyond pain. It is not uncommon for parents to have their own chronic pain problems as well, but using your own pain to connect with your child can sometimes encourage pain-related behavior. Working with a pain psychologist can help you re-orient your interactions with your child.
- Give your child (some) freedom. A typical parent response to a child with chronic pain is to be protective, but sometimes that protectiveness can become over-protectiveness. Your child with chronic pain needs to have autonomy and age-appropriate ways to go out and function and take ownership of their own lives.
- Use a team approach. Being consistent with these suggestions is hard. Your spouse or partner, friends, extended family, the child’s teachers, and health care team and others can all contribute to implementing the boundaries that you determine will best help your child.
Communicating with family
Many parents have told us that communicating with their partner, other caring adults in the family, and other children can be affected when a child in the family has chronic pain. While all relationships are unique, here are some guidelines for communicating with other family members:
Educate others. Start by educating them about pain and inform them of the best approaches to interacting with someone with chronic pain. This enables everyone to be on the same page and dispels potential myths about pain. It may be a good idea to call a family meeting to talk about how you’re all feeling (not specifically about the pain).
Balance time with your partner. Co-parenting is hard enough, let alone when your child has a chronic medical condition. While committing to open, honest conversation early on is key, it’s never too late to start the process of building communication skills with your partner. On way is to have regularly-scheduled times to talk to your partner about issues related to your child’s pain and also how to preserve your relationship, like finding time to go out, or give each other opportunity to do self-care (go to the gym, take a walk go out with friends). Some couples find it help to get counseling or parent coaching.
Make play dates. Siblings can often feel forgotten when one child is getting so much attention. Make it a priority to connect and spend time with the other children. This can be as simple as a quick conversation about their day, or a special activity that you do with just that child. Also plan things to do as a whole family to strengthen family unity and create a “team” atmosphere.
Communicating with others
Often, it is hard for parents to explain their child’s pain and symptoms to others outside the family. Most people aren’t aware of the reality of chronic pain. You need to constantly educate people about the science and treatment of chronic pain. Because pain is invisible to others, it takes both patience and persistence to get others to even imagine it.
Be a coach. As a parent of a child with pain you inadvertently become an expert on pain. Take the time to calmly explain your family’s situation, answer questions, and maintain an open and kind attitude. As Dr. Samantha Levy explains,“I often recommend that [parents] talk to extended family members about what are kind of the dos and don’ts with their child because a lot of times the extended family members and even the school will kind of undo what we’re trying to do.” If the other person does not seem to accept the information you share, try to let it go and move on. Going into too much detail and trying to change their minds rarely works. (This applies to family members, too!) Here’s how one parent describes her approach for reminding the adults in her child’s life:
“As long as I can keep myself in check, I remember to be kind when I’m reminding those people. I usually get a kind reaction back.” She reflects that “they’re not trying to be malicious. That’s not their intent at all. They’re not trying to say they don’t believe her. They’re just forgetting.”
Make a plan. Coordinate with your child’s health care team to come up with best practices for communicating. Different clinicians or doctors have communication preferences, so setting a clear plan for communication can be helpful for everyone. Maintaining an open dialogue is key when communicating with people outside the family, too. As one parent explains, keeping others informed is crucial:
“I think the key is not keeping it in and actually talking to them and telling them what’s going on, so that you’re not tied down to it so much, and you’re able to talk to these people, and then your friends, your really close friends. They have kids. They understand that you want the best for your kids, so they’re going to help support you.”
Find quality support
Communicating effectively with your child, family members, health care team, and others is a crucial aspect of parenting a child with chronic pain, but it’s only part of the process. Many parents express feeling isolated or lacking support, which is why it is also important to seek social support to connect with others facing similar situations.That also means skillfully creating a circle of care. In fact, research shows that we learn positive coping skills best when they’re reinforced by caring and kind people around us. Remember that carving out the time to get support from others can benefit you—and your child!
Here are some ways to go about getting support:
Talk with a trusted friend. While someone who does not have a child with chronic pain might not understand exactly what you’re going through, everyone faces difficulties in their roles as parents, teachers, friends, and relatives. You can usually find common ground—or at least benefit from voicing real issues—with a confidant. As two parents explain:
“When we talk about our kids together, we all embrace that we’re all dealing with different stuff but we all have stuff that we have to deal with. That’s part of being a parent and parenting and taking care of others. Just everyone has their stuff or their baggage or their issues. Whatever it is.”
“Talking with a close friend or family member about the fears and the hopes and the realities of it [helps]. Being able to be honest and not pretend. That’s one of the biggest ways I get my help. Is being able to let that guard down.”
Find a support group. Seek out a support group in person or online. Many in-person support groups meet monthly or even less frequently,. These groups may require some travel, but they can be a huge help. There may not be a support group for your child’s specific medical problem, but c attending a support group for the type of pain problem your child experiences (e.g., rheumatological disorders, etc.), or even a group for families of children with chronic medical conditions in general. Feel free to contact the group organizer, explain your situation, and see if the group would be a good fit for your family.
“What started to help me feel more confident was we started going to a support group that we actually got a lot of information from and what they had done and what helped them and through that kind of learned questions to ask the school and things to help with that. So I think that helped build my confidence as far as what to ask for from the school and how to get them to help.”
Compare notes with another family in similar situation. Ask a member of your child’s health care team if they know any families going through similar situations who might be interested in meeting. Families with similar circumstances often pair up well together. After seeking both families’ permissions separately, health care providers are sometimes able to facilitate this match. As one parent says, finding support when parenting a child with chronic pain is a must:
“Again, you can’t just do it on your own. You have to have a good support. If you do it, I think that’s the key with so many things. You need that extra support, and you have to find it, because it’ll eat you up if you try to keep everything in.”
- Reconsider your typical reaction. Natural parental instincts to check in on a child’s pain can sometimes make pain symptoms worse—not better.
- Maintain open communication with your child and his or her support network, from family members to health care providers to teachers and friends.
- Seek support from a circle of care. Connecting with others, from trusted friends to fellow parents of a child with chronic pain, can benefit you and your child.
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Read more from the Mindfulness for Resilience in Illness Series: Support for Parents
(1) In their new book Pain in Children and Young Adults: The Journey Back to Normal, Drs. Lonnie and Paul Zeltzer guide parents and their children in taking control of chronic pain and returning to a normal life. While deemed “two pediatricians’ mind-body guide for parents,” this book provides invaluable insight for health care providers as well. (p. 35)
Contributors: Laura Seidman, BS, and Sarah Martin, PhD, UCLA; Meredith Trant, MSW and Tara Cousineau, PhD, BodiMojo Inc.
Edited by Kayla McGowan, MA
Photo credit: rawpixel.com