Changing the Conversation About Cerebral Palsy and Chronic Pain

Chronic pain is a big part of having CP for many people. Typically when someone looks at me, they assume I am in a wheelchair because of an accident. When I tell them what it really is they go, “Oh,” and the conversation stops. And that’s another big issue — what little conversation there is about chronic illness/pain is stagnated at best. Just because it’s not seen, doesn’t mean it does not exist. It’s often a major hurdle for society and those in the medical field to look past the surface and take a deeper look. Not only that, but to listen to the person first, then address the patient second.

As you age, your body changes, and I think calling CP “non-progressive” is absolutely bull. I strongly believe that just as the language used in the mental health community is important, the language we use in the chronic illness/chronic pain community is just as important. It makes us feel validated, listened to and believed.

One in 2 people with cerebral palsy experience chronic pain, with an estimated 25 percent of children and up to 84 percent of adults with CP experiencing physical pain. Our bodies age prematurely, due to the fact that we typically use five times more energy than the “typical” able-bodied person. Why do all the studies and resources stop for the adult community with CP, when that is a very crucial time for us?

For example, at age 18 I was diagnosed with arthritis in my back and hips. At the time, my parents and I were told this was typical for young adults with CP. I was also told just to take Motrin to help with the pain I was experiencing. It wasn’t until several years later at a wheelchair evaluation that I was told there were ways to treat the spastic muscles and pain, i.e. Botox. I personally opted out of that option for two reasons 1) I was (and still am) deathly afraid of needles, and 2) I heard Botox can cause muscle tone to deteriorate.

I believe adults with CP get overlooked because the medical field truly believes that CP does not change over time. Or they simply do not know for certain. And that puzzles me beyond anything. Just because we are no longer children with CP, it does not mean we don’t need help and or resources to help us to manage the wear and tear our bodies are taking with each year that passes. Or that we don’t need other resources for things like transportation, living independently, maintaining employment, or continuing education. All of these issues affect the livelihood of anyone who struggles with chronic pain.

When you live with chronic pain due to something not visible to the eye, every day is a “sick day” and how you manage the pain varies. You find yourself reevaluating your day to day to-do list based on the amount of energy you have in that moment — the ever popular “spoon theory.”  The conversation and language about chronic illness and chronic pain needs to be thought about with care and consideration. Science is a complex subject, and when it deals with the human body, it becomes even more complex. But the livelihood and well-being of a person can be at extreme risk if they’re not taken seriously either by the general public and or the medical field.

Listen to us. Put down the charts and questionnaires and just listen — that’s all I ask. Learn about the person first, then help the patient second. That’s is as simple as it can get. People with cerebral palsy and chronic pain may or may not have degrees, but many of us are experts in knowing our bodies, and what does or does not feel right. We live in our bodies, and we recognize every little thing that makes our bodies tick. We have our own knowledge too. And we are more than happy to tell you — if you’re willing to ask sincerely and listen sincerely.

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Thinkstock photo by Srisakorn.