Everyone Knows, Nobody Understands

As I sit at the computer typing this with one hand, I realize that even some medical professionals don’t understand EDS. Ehlers-Danlos syndrome is a connective tissue disorder that can affect pretty much any tissue in your body, whether it be your heart, or the tissue that holds your shoulder in; in the most basic definition, you become stretchy, like gumby! Back to today’s tale, I was headed to a rehab facility to get fitted for a custom wheelchair, I don’t currently have a physical therapist so I had to go to get an eval. The therapist was very nice about not touching my left leg from the knee down (RSD/CRPS limb) but she had to test my arm strength, telling me not to let her push or pull my arm while I held the required position. During this process I knew she popped something out, it was bearable but incredibly recognizable to myself. We went over my medical history first so this girl knew I have EDS but she did not understand. I went to my Chiropractor who uses activator adjustments to help my body align properly, for the first time ever he was unable to get it back in place without forcing it. I now have an arm that is pretty much useless until I try to go to the chiro again. I place no blame on her, but it angers me that nobody, not even a physical therapist, can understand how easily you could injure someone with EDS. My joints pop out multiple times a day with no provocation, and even though I am used to it, it hurts like hell. people need to be educated, if you are presented with a case of someone with EDS ask questions. Everyone thinks that chronic kids don’t want to answer questions, but I would much rather answer questions than be stared at or injured.

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