Remove The Non-progressive sticker when talking about CP
Cerebral Palsy, which is the most common childhood disability in the world, with 17 million affected by CP (myself being one of them.) I was told from a very young age, that my cerebral palsy would either get worse or it would not.
“Okay, well that’s great. Thanks for such a clear example of what I should and should not expect from my body as I get older, that’s a big help.”
When I was 18, and a senior in high school I started having issues with my back pain wise, on my final visit to the children’s hospital I found out that I had the early stages of arthritis in my lower back and hips. That was typical because of the CP, and how it can affect the muscles in the body, especially muscles that are weak like mine were and still are.
I was also told to help with the pain I was experiencing at the time to just take Motrin. it wasn’t until several years later at a wheelchair evaluation that I found out that there were ways to treat the spastic muscles and pain, IE 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 that Botox can cause muscle tone to deteriorate.
So now at 35 years of age, my spasms, muscle cramps, hip pain, not to mention nerve pain and now neuropathy at the bottom of my feet have all gotten worse, and more frequent. Here is my problem with the “non-progressive” term the medical field uses to DESCRIBE CP. Aside from being completely false, I also believe it implies that any person with CP will not have to make any adaptations or improvements medically or otherwise because there is simply need to.
That the person(s) with CP will be able to frequently function all on their own as if all the work, therapies, operations we endured as children were as far as we could take you as far as your growth with CP goes.
And sadly, it looks as if that is the exact stance the medical field has taken when it comes to their approach in dealing with the child turned adult with CP. Chronic pain is a big part of having CP, and typically when someone who looks at me they assume I am in the chair 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. As you age, your body changes, and calling CP “non-progressive” Is absolutely bull. I strongly believe that just like the language that is 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, listen to and believed.
1 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 use 5 times more energy than the “typical” able-bodied person. Why did all the studies and resources stop for the adult community with CP? When that to me and to many others is a very crucial time for us.
I truly believe that 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. How many times have we heard the medical field say how great science, and what a thrill science brings us with all these mysterious illnesses ECT.
Just because we are no longer the child with CP, 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. All of these issues playing into the livelihood of anyone who suffers from chronic pain.
Because when you suffer from chronic pain means that every day is a “sick day” and how you manage the pain from a scale from 1-10. And you find yourself reevaluating your day to day to-do list based on the amount of energy have in that moment.
The ever-popular “spoon theory.” Recently, I found out that Lady Gaga will be debuting a documentary called, Gaga: five-foot-two.” Where she documents her journey with having lupus, like her late aunt Joanne. Her documentary will air on Netflix on September 22nd.
The conversation and language about chronic illness/ and chronic pain needs to be thought about with care, and consideration. And in order to change how we talk about it. Not just to the general public, but to the suffer and their loved ones.
The wind isn’t visible, but we still believe it exists. Simply because it deals with scientific fact. Science is a complex subject, and when it deals with the human body, it becomes even more complex. But when it comes to the livelihood and well-being of the said person (s) lifespan is at extreme risk. Without being taken seriously by the general public and or the medical field.
Listen to us. Put down the charts, and questionnaires, and just listen that’s all we ask. Learn about the person first then help the patient second. That’s is as simple as it can get. We may or may not have degrees like yourselves, but we 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.