Wednesday, August 19, 2015

"I have Ehlers-Danlos" or "Dealing with skeptical providers GAH!"

When you're dealing with health care providers and you have a little-known condition with lots of side issues and alternative symptoms and... well let's just say that some things are highly individualized. What EDS looks like in my body is drastically different (save for a few commonalities) than what EDS looks like for someone else.

For example... I have very large, very strong skeletal muscles. Even on a bad day I can pick up 250-300 lbs and carry it away. Well, not right now, but that's because I am currently on crutches for my knee. So for me, big joint hypermobility is not generally much of an issue. Muscle development and chronic joint damage and inflammation have worked together to give me a lot of painful, but functionalish/stablish, joints.

I mean sure... my hips sublux from time to time, my knee needs to pop 3-15 times a day and my elbows lock occasionally. But your average clinical exam isn't going to show something  like that, because for me the issues all crop up when the joints are under load. On the other hand, it's easy to spot laxity issues when you have joints like a friend of mine whose knees will bend to 90° - in any direction. Or my aunt whose hip joint deteriorated to leave her with no ball in her ball-and-socket joint.

Same condition... different expressions.

So I am on the table at physical therapy and my therapist says "I'm not really seeing a lot of joint laxity here". So then I have to explain myself to this guy, the guy with the Masters degree and 5 years in the field. I brace for the skeptical look... the cluck in the throat and the dismissive roll of the eyes. I brace myself to have to deal with being branded as "yet another know-it-all looking to have someone solve their problems."

So I have to explain that sure, my knee seems "normal" when you do a typical PT-style clinical exam.

That doesn't mean that my cartilage is normal.

That doesn't take into account that sometimes as often as every 5 steps I have to pause and "do that thing with my toe and ankle" to pop it so I can keep walking.

Nor does it take into consideration that your little tugs and twisties are a HELLUVA lot different than what my knee does when it has 340 lbs of me bouncing up and down on it for 4500 steps a day (love my iPhone lol).

But none of that negative nonsense actually comes. This guy listens.

Fortunately he is willing to learn. He's willing to take it in stride that he doesn't know everything and learn, study and help me work on what's ailing me. A therapist like that is worth their weight in gold and I am immensely grateful for him and his willingness to work with me.

It's a blessed relief and a shift from the norm of dealing with providers who would really prefer NOT to have to deal with anything unusual.