The Digging Deep Project is honored to call attention to this article by Samantha Levy, PhD, originally published by the organization Creative Healing for Youth in Pain.
Kids and teens with chronic pain take a lot of a parent’s time and attention, between helping them when they don’t feel well, dealing with school issues, doctor’s appointments, and insurance companies, and on and on.
Sometimes, other relationships in the family can suffer. Siblings or spouses may feel neglected by the primary caretaking parent and may become resentful of the child in pain.
Siblings may feel overlooked as the parent spends so much time with the child in pain, at home and at doctors’ appointments. They also may resent having to do more chores because the child in pain is not expected to do them. Or they may feel it’s unfair that their sibling gets to socialize on the weekend, even if she hasn’t been in school much during the week.
Marital relationships can also suffer under the stress as, frequently, parents have differing ideas about how to help their child, and one parent may feel that the burden falls primarily on him or her.
It sometimes feels impossible to satisfy everyone, and you may be feeling really burnt out! But there are some things that can help with those relationships and with your child’s recovery from chronic pain — which will free up your time, in addition to making you happy that your child is getting better.
Repair your relationships with others in the family.
It is important to repair your relationships with the others in the home so that their resentment of your child with pain doesn’t negatively impact your child’s recovery. You can start with an open dialogue with your other children so that they can express their concerns, anger, resentment, and whatever other feelings they are having.
If your child with pain has a reward system for working on functioning behaviors (which his siblings probably just do automatically), make a reward chart for your other children so they don’t feel left out.
Think of anything that they can work on and reward them — maybe they need reminders to brush their teeth or they tend to have an attitude with you. A reward chart can incentivize brushing teeth without fussing or speaking to you respectfully. Typically, parents can think of at least one thing that their other children can work on so that they feel they are also getting rewarded for working on target behaviors.
It’s helpful for your child with pain to have the opportunity to see that he can function more independently.
Feeling resentment from family members makes the child in pain feel guilty and worthless, and those feelings can then make the pain even worse.
It might be time to expect your child with pain to contribute more around the house. Often, kids with pain can do much more than they claim they’re able to do. You’ll want to prioritize important tasks — like going to school and socializing — but you can also expect small tasks at home, like clearing dishes from the table or folding laundry.
Rebecca was a client with CRPS of her foot. She was taking a couple of online classes, but otherwise had an enormous amount of free time. Her single mom worked full time and did almost 100% of the chores. I asked why Rebecca couldn’t sit at a table and fold the laundry that her brother took out of the dryer.
We began to have her participate in more chores around the house, which was appreciated by her mother, helped her brother feel less resentful of Rebecca, and increased her functioning.
Clients often tell me that they feel guilty that they take up all of their parents’ attention and time.
As we know, kids with pain tend to be very sensitive and feel guilty that they take their parents’ time and attention. This guilt gets internalized as being “bad,” which increases pain signaling. Pain then increases when negative emotions get internalized and not expressed or resolved.
When appropriate, it might be helpful to trust that your child in pain will be okay without you while you take your other children on a special outing. You could ask a friend or relative to be at home with your child in pain while you take your other children out. Or if your child is old enough to stay home alone or with a sibling, go on a date night with your partner, after setting up your child with what she needs while you’re away. The attention to your other relationships in the family will help everyone, including your child in pain.
It is often helpful for parents to work together with a parenting expert to help make sure they are parenting consistently, that conflict over parenting does not affect their relationship, and so that they can parent more effectively. These goals will help the parents and all of the children. It can be upsetting for a child in pain to feel that he is responsible for his parents’ conflict, and it happens very often.
Adam was a 12-year-old with CRPS. He had two older siblings who felt resentful that Adam “got away with everything.” When it came to family outings, his pain level and the wheelchair accessibility of the location dictated whether the family did something fun or not — and his siblings didn’t like that.
Adam’s mom had felt it was not fair to Adam if anyone went on a fun outing without him, so the rule was that either the entire family went or no one went. This rule was born out of love for Adam, but his siblings and father grew resentful of Adam and his mom for this rule because they rarely got to go anywhere.
We changed it so that one person would stay back with Adam (not always Mom), and the rest of the family could go. This change improved Adam’s relationship with the rest of the family because they no longer resented him and were more tolerant of his limitations. It actually worked paradoxically – he began to join in the outings more often because his guilt about keeping everyone back had actually been making his pain worse.
If your child’s anger cannot be expressed externally, it will come out, instead, as pain.
Often, kids with pain have a sibling who is difficult behaviorally. That sibling often argues with parents and rebels in ways that the child in pain does not. The child in pain is often the “good child.”
Because kids with pain tend to be very sensitive, they often don’t argue or raise their voices or rebel in any way with their parents. They see how hard it is for their parents to manage their more defiant sibling and do not want to cause more stress.
Or, they don’t want their parents to yell at them like they do at their siblings. Either way, witnessing the arguments between their parents and siblings feeds into their people-pleasing tendencies. Once they establish themselves as the good child, it is difficult to break out of that role.
The problem is that even though it’s nice to have a polite, well-behaved child, this need to express anger or disagreement turns inward and feeds the pain. The goal is to work on both reducing the parents’ conflict with the sibling and helping the child with pain have the space to express herself more fully.
Very often in my office, I have kids punch my couch or throw a soft object against the wall as they yell what they are angry about. It’s not uncommon for them to be mad that they cannot raise their voice even slightly without their parents reacting, while their sibling yells “all the time.” Parents become so used to the child in pain being well-behaved that they react strongly when that child argues with them.
There’s a saying among pediatric pain practitioners that we know that a patient is improving when she starts being a typical, annoying teen to her parents. This “negative attitude” usually means that the child is no longer holding all of her feelings inside, where they seep out as pain. There is only so long that people can suppress their angry feelings before they find a way to “explode” as pain.
Maya came to me at 16 years old with joint pain and stomachaches. She reported that her sister and mother yelled at each other “all day and night, every day.” Her father was gone on business most of the time, and Maya tried to be polite and “good” with both parents.
She didn’t want to cause more problems for them, and she shrank from the idea of conflict directed at her. Inside though, she was incredibly angry at her parents for the way they treated both her and her sister (who she sided with).
All of these feelings were suffocating her from the inside and turning into pain. She hesitated to express her anger, as her identity was that of a people-pleasing, introverted, well-behaved girl. Once she started throwing balls at my wall and saying what made her angry, though, a lot came out.
Initially, she was still being polite and had difficulty expressing her feelings loudly. Eventually, she began to connect more fully with her anger, and she began confronting her parents about how they were treating her and her sister. This was a difficult process for her, but it significantly improved her pain. Her sister also benefitted by not being the only “bad guy” who wasn’t scared to speak her mind.
Maya was able to effect some changes at home that benefitted her. She could not change her parents in all the ways that she desired, but she learned to express herself with less fear and let their anger not affect her as much. The more she expressed her true feelings, the less frequently she had stomachaches.
Your child’s pain is experienced individually, but the entire family is affected by it and vice versa. While you may feel you have to put all of your energy into helping your child with pain, attending to the needs of your partner and other kids will help both your child with pain and the entire family.
Changes in the family dynamics can help the child’s pain, improve all family member’s feelings, and increase your child’s ability to live his life as fully as possible, before the pain resolves and after.
Samantha Levy, Ph.D. is a clinical psychologist who received her Ph.D. from Georgia State University in the Child and Family specialty track. During her clinical child internship at UCLA in the child track, she became involved with the Pediatric Pain Program (PPP). Subsequently, she obtained her postdoctoral training with the PPP. Depending upon the case, Dr. Levy works either with whole families, individual children/teens, or parents. She employs an array of psychological orientations (e.g. CBT, play therapy, mindfulness, meditation), to help the children/teens with their pain and any accompanying emotional issues. She helps the parents and patients understand the connections between the physical pain and emotional difficulties (mind/body connection). She teaches parenting skills and helps parents make plans to facilitate change in their children, such as in their difficult struggle to give their children the courage to begin functioning more fully in the world once again. Dr. Levy leads the Parent CHYPchat and Creating Bonds groups. Dr. Levy is a member of CHYP’s Clinical Advisory Board.
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