You learn a lot being a professional patient. You learn more terminology and technology than your peers. You also learn what people don’t know. It’s often shocking how much medical professions don’t know.
You don’t expect one person to have all the answers but you expect them to know someone who knows what they don’t know. So it’s always surprising when no one knows the answer. It’s even more surprising when no one seems to want to do anything to help you.
I admit I was naive to the fact that Cerebral Palsy is indeed a lifelong condition that needs to be managed and monitored, even in the mildest of cases. It wasn’t until I was faced with a decline in function & chronic pain that I began to deal with reality.
I knew I was always going to have Cerebral Palsy. A cure was not in my future, not that I would take it. What I didn’t realize was that I’m really not like everyone else, although I am more alike than different. What I mean is I’m different enough that I can’t be just like everyone else, at least not anymore.
When I did seek help I was shocked at how little help I got; wasn’t refusing to treat someone and not offering leads going against, “first do no harm?” Apparently not.
Never mind some of the reasoning I got for not wanting to treat me, after making me wait for hours and charging me for the visit mind you (I’d rather be turned away on the phone while making the appointment). Let’s just say nothing makes you feel old (in a bad way) like people bringing up your age all the time.
I’m still surprised at the self-advocating I’d have to do (and still do) in order to get adequate medical care. And that’s with the hope that I’m able to find something somewhere. I’m all set now, as far as I know, but I can’t speak for the future.
Needless to say I think I’ve done enough internet research on my own to get a Ph.D. in “patient-heal-thy-self”-ology. I’m also a medical resident’s worst nightmare, but I think I was that even before I started researching on my own, now I just have the information to back up my theories.
I’m learning that the future for adults with Cerebral Palsy is largely unwritten, which has good and bad points to it. There are currently no long term studies on individuals over 18 who have Cerebral Palsy. There aren’t even enough adequate health care providers, so how can there be studies.
I wish I knew at 20 what I now know (or sooner); although I’m still not sure I would change anything. I should’ve paid attention when I didn’t have to fight so hard to get attention. I should’ve asked the questions I thought were stupid and didn’t ask. I should’ve asked any question at all. I shouldn’t have told myself, “I’ll worry about that later,” because “later” came a lot sooner than I expected it to. I should’ve taken my health more seriously when the professionals did. Then maybe we wouldn’t have to work so hard to be on the same page today.
I think I will always be surprised that there’s still so much work to be done in the 21st century, and how much has been left unchanged, for a condition that was discovered in 1860.
I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).
*A similar version of this post was written on April 12, 2013