How to Explain Your Child's Chronic Pain to Family and Friends
Brought to You by Creative Healing for Youth in Pain
One of the most common difficulties expressed to me by parents of kids with chronic pain is that their extended family and friends, parents of their kids’ peers, members of their church, and so on, do not understand what is wrong with their child. People have the tendency to dismiss or disbelieve what they do not understand, and this lack of understanding can be very isolating for the entire family of the child in pain.
Although 25% of young people experience some degree of chronic pain at some point, their parents tend to feel that no one else is going through this experience. This disconnect may be due to the fact that families with a child in pain tend to be isolated at home with their child, or because it feels too hard to explain it to others. I have even had more than one client at a time in the same school -- and each family thinks their child is the only one at that school dealing with chronic pain!
Why It’s Difficult to Understand Chronic Pain
One of the reasons that chronic pain is difficult to grasp is that it is invisible. There is often no cast or crutches to indicate a problem, especially because headaches/migraines and abdominal pain make up such a large proportion of the causes of chronic pain in youth.
Another reason that it is hard to understand chronic pain is that pain itself is subjective. This inability to know how someone else is experiencing pain -- along with it being invisible – may lead others to believe that the person is faking or exaggerating their pain. People who have not experienced the debilitating nature of chronic pain sometimes think that the person is wimpy and should just suck it up.
Lastly, people do not understand that chronic pain, in and of itself, is its own diagnosis or disease.
How to Talk to Others About Your Child’s Chronic Pain
What details and how much information you provide to another person about your child’s chronic pain will depend on your relationship to that person and the setting in which you know them. Thus, instead of giving suggestions for how to talk to people about your child’s chronic pain, I will give you some bullet points that you can pick and choose from, depending on who you are communicating the information to. You can decide how you put it together for each person in your life.
- Your child is not faking! Most children do not want to be in the isolated state that they find themselves in during this time.
- Everyone has experienced acute pain. Remind people that acute pain is not fun! Tell them to imagine that they are in acute pain all of the time.
We have all touched something hot, stubbed our toe, pulled a muscle, and so on. The experience of acute pain is very important for our survival because it alerts us to an injury that may need medical attention, such as a broken bone or an infection. With acute pain, nerves from the area of injury or illness send pain signals to the spine and up to the brain, which then sends a message that you are in pain.
- With chronic pain, the nerves are sending pain signals, even though nothing is wrong anymore with that part of the body. In other words, hurt does not equal harm.
The person is still experiencing pain (hurt) even though that part of the body -- which may have originally been injured, inflamed, infected, or sick -- is better now (not harmed). The pain signals have not turned off, even though the person is not injured anymore (or may never have been). There are changes that happen in the pain processing pathways that we then call “centralized pain” -- these pathways can then lead to pain sensitivity in other parts of the body that weren’t painful to begin with.
- The experience of having pain that lasts for a long time can actually then affect how the brain processes pain. This change is why the chronic pain is defined as its own disease or disorder at this point.
- Chronic pain does not mean that your child is always in pain or always at the same level of pain. It can come and go, and can frequently change in intensity. This variation can lead people to think that the child is faking the pain if she is at school seemingly fine one day and absent the next. It may be helpful to remind the person that they themselves may have had a headache one day and not the next. Your child may be like that, except that pattern of off-and-on pain happens for months or years for them.
In addition, people with chronic pain often get good at functioning through the pain and not showing it to people outside of their immediate family or closest friends. So even though the child may appear to be fine, he may be in a lot of pain, but not showing it. On days when he is not at school, he is likely in too much pain to mask it that day.
- People with chronic pain have difficulty sleeping. Sleep deprivation also exacerbates pain. So, the fatigue and pain then both escalate.
- Chronic pain causes isolation, which we all know from the pandemic leads to anxiety and depression. Then, the anxiety and depression can exacerbate the pain… another vicious cycle.
Here is one example of what you might say:
“Lucy had a bad stomach virus. Once she recovered from the acute illness, the pain signaling in her body was still active, so she experiences terrible stomach pain, even though there is nothing actually wrong with her stomach anymore. She has developed a chronic pain disorder which causes her brain to more easily sense parts of her body as painful. Sometimes she feels better and sometimes she feels worse, so it is hard to plan anything because we never know how she will be feeling at any one time. The pain also makes it hard for her to sleep, so she is often really tired. Fatigue makes pain worse, so it is like a vicious cycle.”
It is unfortunate for you to have to explain your child’s situation to everyone because, with most other medical diseases or disorders, this would not be the case. Attention is being paid to chronic pain now more than ever before, so hopefully one day, more people will understand what your child and your entire family are experiencing. But for now, you can spread the word, one friend or family member at a time.