6 Ways to Help a Child With Chronic Pain Communicate

I remember when it happened. My daughter was 5 years old. She stepped onto the edge of a large rock and her ankle collapsed grotesquely underneath her. I usually don’t react right away, because I’ve seen a lot as an athletic trainer in my days. This one made me react, though. She rolled on the ground and cried for 30 seconds, yet, despite the severity, she bounded back up and ran off. That was the third time I watched her roll the same ankle in that particular week. It made me nervous, but she didn’t bring it up again and it physically appeared as if nothing had happened.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A year and a half later, we found out she had chipped a bone in her ankle. She’d had a random flare up of ankle pain radiating up to her hip for about 24 hours, which then calmed down to an irritating local ankle pain and swelling. She was incredulous when the doctor asked when it had started, and I answered with a time frame of weeks. She said it started years ago and was irritated worse recently with something she did in gymnastics. She had never said anything, so I didn’t know to ask.

I realized I wasn’t listening in the right way.

You see, my daughter has hypermobile Ehlers-Danlos syndrome, just like me and many others in her family. And now I know she has the similar pain distortion that I grew up with.

As a young athlete, I thought I was super human with massive joint injuries that hurt for a day and then seemed to vanish. They didn’t vanish. I didn’t realize that lower levels of pain, discomfort, aches, twinges and the rest of the spectrum of pain was not a daily occurrence and nuisance for others in their youth. No one told me it was abnormal, so I never brought it up. It’s not knowing you’re color blind until someone asks you to describe the color of grass.

So, how do we listen to our kids better if they don’t know what’s normal?

We have to teach them what is and isn’t normal and how to listen to their bodies. Start a conversation with them, so you can listen better as well. Here are a few tips on how to figure out a communication strategy with a child that may not be processing sensations as others do:

1. Start a dialogue on pain.

Some children (and even adults) don’t know daily pain is not normal. Starting from the beginning and explaining that everyone is different is important; some have no pain, some have pain everyday and there is every pain range in between. Pain is something to tell a grown up about, though, so that they can get you the best help possible to make you more comfortable.

2. Teach them types of pain.

Write down descriptions of pain to keep track of, and see if there is a commonality to the reports. Neuropathic (nerve related) pain can be described as radiating, pricking, tingling, burning, hot, or cold. Orthopedic (muscular) pain is sometimes reported as aching, blunt, dull, gnawing, nagging, tender, sore, stinging, or piercing. Psychosomatic pain is pain that is further influenced by emotions and can be described as nauseating, unbearable, tiring, frightful, or “killing them.” Pain is a tricky definition to latch on, as someone may be experiencing a combination of these different types, and they are all important to seek out help and treatment for.

3. Teach them to rate pain.

The Wong-Baker Faces Scale is a great tool to use with kids to track the level of pain they are feeling. Show them the scale and have them point to a face that their pain is making for them on that day.

4. Teach them to track pain.

Constant and consistent pain are two very different things. Constant means the pain is always there no matter the time or what you do. This is 24-7 pain. Consistent means that it hurts in a pattern, whether with a certain activity, movement, position, or even at a certain time of the day; differentiating the two will greatly help healthcare providers determine the cause of the pain. Usually the pain is consistent rather than constant. Figuring out with what activity or when the pain occurs is also extremely helpful. Asking them what makes it feel better or worse can be helpful in figuring out where it is coming from.

5. Check-in with emotions.

We don’t check in with these enough. Emotions and pain can feed into each other as we see with psychosomatic pain and pain disorders. Start this early with all children. You can use the same happy face rating scale previously mentioned, or emoji grids are available online to track daily emotions with emoji faces. You can start to track and see if there is a correlation with mood and pain levels.

6. Schedule check-ins.

I can’t emphasize this one enough! You must check in with a child that deals with chronic issues. They usually don’t intuitively know to openly offer information. Schedule a once a day, once a week, or once a month check-in depending on what your child seems to need. Keep a journal so you can remember previous responses and track if you need to for physician appointments.

We do the best we can as parents, and most are hanging on by a thread to do so. Those dealing with a chronic illness in themselves, a child, or both have a very full plate. Things may slide off and onto the floor sometimes. That’s OK. Clean it up when you can. If this sounds like something that would be helpful, see if you can make some room on that plate to fit it in to a routine. If you forget it, it’s OK. Return to it when you need it or remember about it again.

Keep the dialogue open with children experiencing chronic pain. The more often you bring it up, the more they may start to understand their bodies and learn to self-monitor. You can give them the ability, at a young age, to be in tune with what is going on in a body that may seem out of control. This is an invaluable tool that they can carry throughout life.