How to Show Up Most Effectively for Your Child with Chronic Pain

This post is written from the perspective of a young person who participated in CHYP.

Especially toward the beginning of my illness, I remember the communication between myself and my parents being chaotic, fear-dependent, and full of conflict. I would beg for help, and my parents couldn’t give me what I desperately needed - relief from symptoms and painful emotions.

Even if my parents were pain doctors (which they are not), they still would not have been able to heal me. This is because the journey of recovery from chronic pain has to be taken by your child ultimately.

What you can do is be the most significant and most valuable ally for your kid. How? Sit in the discomfort with them. Don't try to change “negative” moments, feelings, or thoughts. When I was sick, the most peaceful and pleasant moments were the ones in which, even though I was in pain, I didn’t feel alone in the experience. I was made to feel less alone when my anger, sadness, and fear were reflected to me with compassion. Here are some examples of what that may have sounded like:

“____ sounds so awful.”

“I’m sorry you are experiencing ___.”

“I wish I could do more to help with _____.”

“____ sounds really uncomfortable, I’m sorry.”

“I’m hearing you express ____. I’m listening.”

Toxic positivity is very real–even if it comes from an authentic place. In the early stages of my illness, my parents would often try to shine light on things to help. I was not in a place to receive this light, and so I’d become angry and more dysregulated. Instead of trying to spray perfume on poop (which, ultimately, still stays poop), there are other ways to offer support to your child.

First, ask what your child would like. It’s important to ask what would “feel good” to your kid, as it may change frequently. You can offer to help (take action), hear (listen), or hug (comfort) them. Here are some examples:

“Is there anything I can do to help?”

“I can ____. Does that feel like something you’d like me to do?”

“Is there an action you’d like me to take right now?”

“Would you like me to do anything to support you or just listen?”

“How can I best support you right now?”

“Would only listening be the most helpful for you right now?”

“Are there ways I could comfort you that would feel helpful?”

“What would feel comforting to you right now?”

You can’t control your child or their pain/symptoms. While this may initially seem like an unfavorable thing, it can be very freeing to know you aren’t responsible for several aspects of your child’s recovery. What you are responsible for is how you show up in each moment. You have the power to be a grounding and regulating force for your kid. It will take practice, and you may not nail it during every interaction, but by regulating your own fears and desires about the situation, you can provide respite for your kid.

I love my parents, and the moment they stopped fighting my pain—which is ultimately a part of myself—our relationship began reforming into something beautiful. I repeatedly asked my parents to “be on my team.” This didn’t mean fighting for me; it meant standing beside me as a witness to my own journey.

As someone who has been through the darkness and made it out to the other side, I know how impossible chronic pain feels to everyone involved. I want to repeat and emphasize that all you can do as a parent is show up and do the best you can. You don’t have to fix everything. Your unique parent/child relationship can survive this challenging time and later thrive–like mine.