Invisibility holds an attraction that I cannot explain. I was one of those children that disappeared into a crowd when my parents didn’t watch me like a hawk. I found the thrill of it irresistible. There is a sense of ease for me when I can blend into a crowd and as someone who enjoys people watching, being on the sideline is most definitely preferable. I find the visible aspects of EDS both easy and difficult to deal with.
It’s easier to hide invisible symptoms. I can camouflage a headache much better than I can a dislocated wrist. Conversely, show up at A&E with a migraine attack gone rogue and expect to be accused at least once of being either a drug addict or mentally unstable and most likely both. Show up with a dislocation and you’re offered more drugs than I would feel comfortable taking, in fact, it’s insisted upon when I politely decline. Headaches are invisible, protruding bones not so much.
Except when it isn’t obvious. The thing about EDS is that bones slide out of place all the time, it is just a matter of degrees. Sometimes the shift is fractional, other times it is a full dislocation. I am not a medical expert. I have no medical training. It is very hard to tell where on that sliding scale something that goes wrong is.
I can’t compare one wrist to the other as both are unstable so neither is normal and trying to compare my hypermobile joints with Chris’ normal joints doesn’t work either. It begs the question ‘is that just too bendy or has it started to come out?’ If you have a rare disorder and medical text books say that it’s virtually impossible to dislocate your wrist in the absence of a fracture and/or ligamental tears and you’ve just done it, there isn’t many places one can go to find some clarification.
This does beg the question. Does it really matter? Well, yes, it does. Some bones move out of place and then move themselves back into place spontaneously. Others do not. Sometimes they need a bit of a helping hand when they get stuck in misalignment. If I don’t know how they have moved, I don’t know if they’re going to move themselves back.
A subluxation is a partial dislocation. I find subluxations both painful and annoying. As subluxated joints tend to move in and out to varying degrees all the time/ It’s always painful and disturbing, they’re just as bothersome as dislocations. The only advantage/disadvantage is that it’s an invisible pain, it’s easy to reduce and it’s not a stoppable force.
Dislocations are “complete disassociation of two opposing or joining bones“. I dislocated my shoulder twice this week and after a month of recurrent shoulder subluxations, it was an enlightening event. It made me realize that I am prone to indulge in a little rosy retrospection.
I forget what it’s like to dislocate shoulders and wrists and elbows and knees and, and, and. I fall into the trap of using the word dislocation and subluxation interchangeably and I really shouldn’t. I didn’t used to. Over time, it stops being important whether a joint fully or partially dislocated. I tend to manage both occurrences equally well. But it should matter.
Waking Chris up in the middle of the night with “I’ve dislocated my shoulder and put it back wrong and now I think there’s blood pooling underneath my skin” should have a more pronounced response and it would have if I hadn’t said “I’ve dislocated my shoulder” seven times already that evening. Dislocation, subluxation; similar, but not the same. I shouldn’t forget. It leaves me unprepared for the worst.